Autistic Burnout: An Interview With Researcher Dora Raymaker

Dora Raymaker is a researcher, writer, and artist based in Portland, Oregon. She is co-director of the Academic Autism Spectrum Partnership In Research and Education (AASPIRE) with Christina Nicolaidis. AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

Fergus Murray interviewed Dora for Thinking Person's Guide to Autism.

Photo courtesy Dora Raymaker
[image: Dora Raymaker, a white person with
curly shoulder-length red hair with one teal
lock, glasses, and a steady gaze.]

FM: Could you summarise what autistic burnout means to you?

DR: The question evokes for me the impacts of autistic burnout on my own life, like "it means feeling my abilities and successes slip away and being powerless to stop it..."

But I think it is more asking, "how would you define autistic burnout?" I think that's an important frame for the rest of the conversation. We're still a finalized-analysis away from coming up with a definition grounded in research, but a fair start at an operational definition might be, "A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one's abilities and needs." In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

FM: There has so far been very little research on autistic burnout, although it is something autistic people have been talking about for a long time. Why do you suppose that is?

DR: Autism research, until fairly recently, has been mostly directed by non-autistic researchers, professionals, and family members whose priorities may be different from, or not fully inclusive of, the priorities of autistic people. Add on top of that a still-pervasive medical model of autism in the research world (disability as a disease to be cured, rather than disability as a divergence to be supported) which makes it even harder to get through the barriers between what we've been talking about wanting and what autism research is actually examining. This is a complicated topic I could probably spend the whole interview on, so I'll stop my geekery about it there, LOL.

Anyway, I'm hopeful that we'll have more research about autistic burnout (possibly disability burnout?) in the future. Autistic people have more voice in research than we used to, from the policy level to the participant level. Also I'm anticipating the surge of work into connected topics, such as camouflaging and mental health, will bring autistic burnout more into the awareness of the research community.

FM: How do you see the relationships between burnout and other experiences often reported by autistic people—meltdowns, shutdowns, sensory overwhelm, and catatonia?

DR: These other experiences are distinct states from burnout, but people report experiencing them far more often when also in a state of burnout. If we consider autistic burnout as a reduction in resources to cope with activities and environments that were already difficult—including by camouflaging and all the negative consequences of that—then it makes sense that a person would be left with less ability to tune out sensory stimulus, breathe through their trauma-reaction, or otherwise avoid the triggers for these other states. Nearly everyone we've spoken with in our research cited increased instances of these experiences as a consequence of the burnout.

FM: Have you been able to show what some effective strategies for coping with or avoiding burnout might look like?

DR: We asked people in our interviews what strategies helped them avoid or recover from burnout. We also looked at social media, where people have been sharing strategies. The community has also been compiling this information, and there are some good resources out there, like this guide from Autistic Women and Nonbinary Network (AWN). I recently did a talk at Seattle Children's Hospital on the research, and the slides from that talk also list a number of the strategies. You can get the slides here, and the talk should be available on YouTube at some point. Until then, it was recorded on Facebook, and you can view it there.

The tl;dr version: being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.

FM: Many autistic adults report that they only realised they were autistic (or only received professional help) after experiencing burnout. Some may have talked to specialists before this, and been denied a diagnosis because they were not seen as sufficiently impaired. Do you think it might help some people to avoid burnout, if it was easier to be formally identified as autistic without insisting that someone's autism must 'limit or impair everyday functioning'?

DR: Yes, absolutely. Even just realizing that you're probably diagnosable could be helpful, because it gives you access to community wisdom, and the strategies people use.

However, if the dynamic of autistic burnout really is related to spending more resources coping than one has, I'm not sure the real leverage in avoiding burnout resides with the autistic person alone. Especially because a number of the strategies people have to avoid or recover from burnout involve being able to act more autistic, being accepted as autistic, and getting support and accommodations--all things that require the cooperation of others. So we need to also be looking at ways to make neurodivergence more accepted and less stigmatizing, as well as ways for services to become more inclusive of supporting autistic people who appear to be "functioning well." Knowing you're on the spectrum, alone, isn't, in my opinion, going to fix this.

FM: Some have suggested parallels between autistic burnout and Chronic Fatigue Syndrome. Do you think this is likely to be a fruitful connection to explore in future research?

DR: I'm not a clinician and don't have interest in clinical research. However, there are clinicians like Christina on my research team. Her impression from descriptions of autistic burnout are that it's likely a different thing from CFS (although one could certainly be experiencing both), and that addressing autistic burnout directly is probably going to help more people than looking for a possible relationship between it and CFS. That said, it could be research for someone else with interest in that area to explore.

FM: You’ve completed the first stage of your study, interviewing ten autistic people about their experiences of burnout. Did any surprising themes emerge in these interviews?

DR: Since many of the people on our research team have been part of the Autistic community for years where autistic burnout is frequently discussed, I’m not sure that there were any particularly surprising themes to us. One of the themes that might be most surprising to the general public is that some things they might think are good for autistic people—learning to emulate mainstream social behavior, appearing to “overcome” autistic traits, things like that—may actually be hurtful in the long-term. I think it makes sense if a person thinks about it—if you were asked to pretend to be something you’re not constantly out of fear of negative, possibly life-threatening consequences, and it was very difficult to do, how long could you keep it up? I think it might surprise some people how close autistic burnout is in a lot of ways to professional burnout, or to caregiver burnout, or something else that they might have experienced themselves.

FM: You plan to develop tools to measure burnout in the second part of your study. How might you go about measuring something like that—and what sorts of uses do you foresee for it?

DR: Measurement is a whole field of research in itself. This study is using a mixed-methods approach to create a survey. That means first we’re doing this qualitative part to understand what ideas, or “constructs,” might need to go into a survey to measure autistic burnout. We’re putting together the symptoms of burnout that people talked about in their interviews, on the blog posts, in the community to create a draft of that measure. Then we’ll be trying the survey out with a small number of participants. They’ll take the survey, along with some additional surveys, and be able to give some written feedback. We can then run statistics on the results to start validating the measure. We can learn things like, does the survey contain the right constructs? Do the sections of the survey group together well? Is there an expected relationship between scores on the autistic burnout survey and another survey; for example do people with high burnout scores also have low self-efficacy scores (since people in our interviews talked about a loss of self-confidence when in autistic burnout)? These are all parts of validating a measure. Then we refine the measure and test again.

As far as uses, there are many. Two big ones related to the work I’m most interested in are: 1) It can be used to tell if someone is experiencing autistic burnout, which could then change how services or supports relate to that person; 2) If anyone creates an intervention, or a program of some sort, to help prevent or relieve autistic burnout, a measure will be needed to know if the intervention is working; in other words, you need to be able to measure it to know if you have changed it.

FM: What’s next for AASPIRE?

DR: A lot! We have multiple projects, including our ongoing work on issues such as healthcare and employment, and a new branch of AASPIRE starting up in Australia. You can visit aaspire.org to see some of what we’re up to. As far as the burnout research, the next steps after finishing up this study are 1) to publish papers in the academic and clinical literature to start getting the word out, and 2) to apply for new funding to further test the measure and begin exploring further how autistic burnout impacts people’s lives, so that we can start working toward creating an intervention to prevent or relieve it—as well as giving others tools to do the same.

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Meltdowns: How Autistic Humans Experience Crises

Sonny Hallett 
medium.com/@sonyahallett

This post is about what meltdowns feel like to me, what impacts they’ve had, and what I’m learning about them. Other autistic people may have very different experiences, but if you are autistic yourself, I hope you will find something relatable about my descriptions and illustrations, or something helpful or encouraging in the things I’m learning. If you’re not autistic, I hope this gives you some insight into some aspects of a different way of being, different ways that humans can experience crises, and how your reactions could help or hinder.

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I’ve been thinking about autistic meltdowns lately, and how little they’re understood. Too much of what society hears about meltdowns, and what gets written, is about autistic kids, their experiences related by parents and professionals. Of course, many autistic people have also talked about their meltdown experiences very eloquently, but as with so many aspects of being autistic, our lived experiences are still very underrepresented in dominant narratives.

I was diagnosed autistic as an adult, at 28. I had always experienced meltdowns and have vivid memories of them happening throughout my childhood, teens and 20s, but I never understood them, and neither did anyone around me. As I got older, these ‘outbursts’ became less and less acceptable and more alarming to others, so I learnt to hide them as much as possible—which was not always.

Now that I understand my meltdowns and their triggers better, I have observed the buildups to usually take two distinct forms: gradual or sudden.

[Click images to enlarge]

[Image description: a five panel black-and white cartoon.
Panel 1: Sketch of a white large feather on a black background. The tip of the
feather is pointing at the lower left corner on a diagonal. The caption at
the top of the panel reads, in white, “Sometimes it builds up over time…”

Panel 2: The same feather, its tip pointing at the top right corner,  also
on a diagonal. The caption continues, “a gradual increase in nervous ENERGY”

Panel 3: Sketch of a black door marked “Pull” with a white frame. A person
is reaching towards the door handle with their left hand. They are wearing a
coat and fingerless gloves. Only their arm is visible. The caption  continues,
“Like STATIC in cold dry weather, a gradual shift from an irritating
tickle to pinpricks of electricity”

Panel 4: the same person pulling their hand away from the door. Their hand
 is surrounded by small white lightning bolts, and a large white lighting
bolt is drawn on the top of the page. The caption continues,
“To full-on JOLTING SPARKS”

Panel 5: Sketch of bird flying in a cloudy sky at the top of the panel.
The rest of the panel is sketched perpendicular to the sky. The panel
is the same size as all the previous panels put together. There is a
drawing of a loop of road on the far left side of the panel. There is
a tangle of arrows and road signs on the right side of the drawing. 
The caption finishes, “Sometimes it comes out of the blue…
Perhaps from a SUDDEN CHANGE of plan, leaving everything
confused and out of control.”

In full, the caption reads: “Sometimes it builds up over time…
a gradual increase in nervous ENERGY like STATIC in cold dry
weather, a gradual shift from an irritating tickle to prinpricks of
electricity to full on JOLTING SPARKS[.] Sometimes it comes
out of the blue… Perhaps from a SUDDEN CHANGE of plan,
leaving everything confused and out of control.”]

Whatever the type of buildup, I think it is always a reaction to depleting cognitive load, or in other words, too much stuff taking up my brain’s processing capacity, until it’s overwhelmed. In the case of a sudden change, the unexpected thing, which might be fairly trivial, hits me like a tsunami. All my resources are taken up trying to readjust to the new situation — whether it’s making new plans, figuring out how I feel about it, how to react, etc. This doesn’t actually mean that I’m necessarily bad in a crisis. In fact, many of the crises that happen have clear procedures to follow, or they might be things I’ve made contingency plans for. It’s the things I haven’t had a chance to script for or plan out internally that can throw me.

The gradual buildup kind can bring lots of different factors into play. Everything that happens in a day, from needing to eat, dress myself, and walk the dog; to projects for work, social demands, other uncertainties or worries, and illness or pain… all of these take up some of my diminishing resources. It can therefore take a fairly trivial thing to bring them all crashing down.

[image description: drawing of a person looking towards the top right of the window. They are wearing a fuzzy sweater and black pants and shoes, and is perched with one shoe on a rectangle blocks labels “WORK THING.” They are juggling two balls, one labeled “FOOD” and one labeled “WASH,” in his left hand. They are balancing a diamond block labeled “PAIN” on their left shoulder. On  their right side, they are balancing a pile of differently shaped blocks on their thigh and holding them in place with their right hand. The blocks are labeled in all caps, from top to bottom: 

    •Bad Noise 

    •Demands

    •Look “Normal”

    •Worries

    •Social Things

    •Uncertainties  

    •Very Uninteresting Things

A crane is depositing a square block labeled “NEW THING” on the top of the pile. Finally, the person is also holding a basket full of snakes in the crook of their left arm. The image is captioned “COGNITIVE LOAD.”]

These days, I know that I’m running dangerously low on resources when I start finding everything much harder to do and filled with anxiety, including normally very simple tasks like remembering to eat or choosing what to wear in the morning. I also feel it physically: a gradual buildup background hum, like being under high-voltage pylons. The growing buzz also makes me much more sensorily sensitive: noises I’d normally tolerate become increasingly painful, textures freak me out all over the place, my whole body tenses up.

[Image description: a drawing of a white transmission tower on a black background.]

On days like these, I wake up feeling like my bones have been vibrating in my body all night. The energy makes me want to move about and fidget and shout to shake it out, but also fills me with a deep and draining exhaustion.

[Image description: sketch of a body sitting in bed with its skeleton visible. The body is
sitting with its back to a pile of pillows and its legs tucked are under a blanket.
The skeleton is holding its hands in front of its face. The words “plink,” “click,”
 “shake,” “plink,” and “rattle” are written clockwise around the outside of the body.]

In those moments, every additional demand exacerbates and prolongs the pressure. Sensory stuff, decisions I need to make, other people to worry about, or being in public and needing to hide. I might still be able to put off some of the ‘explosion’, but at the expense of things being much more explosive later. The buildup of energy feels like unbearable pressure in my whole body. I need to move or yell or cry. I need to hit things, I need to feel physical pressure or pain so that I can be sure my body isn’t fragmenting.

[Image description: a black square divided into 3 sections split diagonally:
right triangles at the top and and the bottom, separated by a long diamond.
In the first section is a drawing of a white palm. The section is captioned
“My edges feel fuzzy, like I’m drifting apart.” 
The second panel has a drawing of the same hand in a first. It is captioned,
“Perhaps that’s partly why…”
The third panel contains a drawing of a fist slamming into the bottom
 of the square, cracking the surface below it. Above the fist is a large,
jagged semi-circle, showing that the fist was slammed down with great force. 
The caption finishes, “…I feel like I need to SLAM them back into place. 
In full, the caption reads, “My edges feel fuzzy, like I’m rifting apart.
Perhaps that’s partly why… …I feel like I need to SLAM them back into place.”]

Amidst all this, I have a pretty clear inner voice narrating and observing everything that’s happening, but very diminished in its ability to be in control or make decisions. I can just about make some small judgments about what not to flail at, for example (other people, pets, breakable things), but making more complicated decisions, responding to questions, or even talking can feel overwhelmingly difficult. Trying to chase down my thoughts or words can feel like trying to grab fish in a pond with my bare hands. I need time and quiet to calm down before I can think properly, and every new demand is just prolonging how long that will take.

[Image description: a series of 3 sketches. 
Sketch 1: three small fish swimming counterclockwise in a circle.
The fish are labeled “WORDS,” “DECISIONS,” and “ANSWERS.”
Sketch 2: two white hands reaching into a pool of water. 
Sketch 3: a spiral of white scribbles on a black background.]

As an pre-diagnosis adult, my meltdowns were one of the most obvious ‘different’ things about me that I was scared of, and didn’t understand. The feeling of overwhelm can be such that I felt like I would do almost anything to make it stop, even if it meant self-injury or breaking things around me. I also worried that I might hurt other people, and the fear and worry my meltdowns elicited in people when they did see them (and they were often people I felt safe around) made me worry that I was dangerous, or bad, or seriously broken in some way.

The fact is that while my actions are normal for an autistic person, most non-autistic people don’t know how to react, and may find it alien and alarming due to a lack of understanding. I often think about how people familiar with panic attacks know that they are not an emergency, that they feel worse than they really are, and learn not to panic.

Over the years, I’ve encountered a number of people's reactions to me while I'm in meltdown or near-meltdown: from fear that I was going to be violent or concern that I was having some kind of mental breakdown, to worry that I lacked capacity for making decisions (one ex used to say that those times, and times when I expressed intense joy, made him worry that I didn’t have the ‘mental capacity’ to consent to being in a relationship as an adult). I’ve been told that I am overreacting and need to stop crying, when it’s not in my control, I’ve known people to get angry and tell me I’m ‘acting out’ for attention, and I’ve seen people panic and edge away from me, making me feel like I am some kind of wild animal that they think needs to be contained.

[Image description: a person with a frightened expression inside
an angry bear. The bear is snarling at two people in the right
bottom corner. The person on the right is also terrified.]

I remember a particularly turbulent time in my teens, going to a Samaritans drop-in, desperate for help with the feelings building up inside me. The well-intentioned volunteer didn’t understand what was happening with me, and my frustration and fear at not being able to communicate, plus her suddenly grabbing my hands in an attempt to comfort me, tipped me over into a full-on meltdown. I remember hiding behind the chair trying to get as far away from her as possible, and hitting the chair, the floor, myself. I remember seeing her back away in alarm and panic, call two more people into the room, who quickly escorted me out of the building.

Another time, I was in a French lesson at school. It was a hot summer day, the windows were painted shut, the teacher was behind on the exam syllabus, and was making up for it by simultaneously playing us ‘accelerated learning’ tapes, making us finish written work, and sorting out individual paperwork by calling students up to the front. The heat and noise and fractured focus closed in on me more and more. I remember the walls spinning and my breath getting short and panicky. Nothing was making sense and all my senses hurt. I was trying to focus, but my thoughts felt like they were only slowing down, and I couldn’t filter anything out: the unpleasant texture of my school uniform, the tinny tape speakers, another student dropping a pencil…

[Image description: two people sitting back to back. The person on the right
has their knees up to their chest and their arms wrapped around themselves.
They have an anguished expression on their face. The person to the left
is the same shape and size, but is filled with white snakes and
hyenas with red eyes screaming at and fighting with each other.]

I felt like a huge force was overwhelming me and I couldn’t stop it: suddenly I got up from my seat, violently, ripped up the paper in front of me in handfuls, and screamed, “THIS IS MAD WE CAN’T WORK LIKE THIS.” I don’t remember anything after that, possibly, except stunned silence and me sobbing. The next day my form tutor said, “I heard you had a funny turn in your French lesson.” I couldn’t explain it, and it wasn’t brought up again asides from by other kids, some of whom would yell, “THIS IS MAD WE CAN’T WORK LIKE THIS!” at me for the rest of my time at that school. I’m still not sure if it was all teasing to be honest, as I think no one else in that class was having a good time that day either.

Some years later, at university, a good friend who used to regularly pop round to my room in the dorms came by after I messaged her saying I was having a tough time. I was under the desk, squeezed in as tightly as I could. I don’t remember what else I was doing but I do remember the expression on her face, and her quickly leaving. We weren’t so close after that.

[Image description: a loop of overlapping white ferrets with red eyes
surrounded by a larger loop of snakes, their bodies wound together.
The snakes and ferrets are snarling at each other.]

Learning that I am autistic, and understanding more about what that means for me, made me realise that meltdowns are a normal part of autistic experience. I’m not dangerous, it’s not a sign of some kind of terrible mental deterioration or break from reality — it’s just a response to stress and overwhelm. Don’t get me wrong, meltdowns are still deeply unpleasant, but there is less fear of the unknown attached to them, about what could possibly be happening. I can start to work on learning what my triggers are, when they might be imminent, how to prevent things from escalating, and what I need in those situations.

The fact that I can start to figure these things out for myself, with the help of the brilliant autistic community, as well as great allies and mentors, now means that I am also starting to learn to communicate what I need more clearly to others. 

Taken in isolation, meltdowns are unpleasant, exhausting, frustrating, sometimes even frightening, but they are also self-limiting. Knowing this, and why they happen, means that to me they really aren’t so much of a big deal in the grand scheme of things any more — I’m going to have them now and then, but that’s ok. The things I still worry about relating to meltdowns are almost all to do with the long-term repercussions of what might happen if I have a meltdown, or start getting close to one, around other people.

It seems like a pretty difficult responsibility that society places on us, as autistic people, to often have to do a lot of clear and coherent educating for our own safety, and to reassure others, just when we’re feeling at our least clear and coherent, and are in most need of reassurance ourselves. There are far too many examples of autistic people being arrested or sectioned, let alone reprimanded or ostracised, for having a reaction to difficulty and stress that is normal to our way of being, but not nearly well enough understood by others.

Following a meltdown that others have witnessed, I’m usually stuck endlessly replaying their reactions, worrying about what they might think, whether they are angry or scared or think less of me, dealing with any consequences that may have come from it. But more and more people are also starting to understand. There are several people in my life now, autistic and non-autistic, who I feel safe to be stressed around, even if I feel like a meltdown might be imminent. Times when I haven’t been ok around these people, they have offered the calm and reassurance I needed, and not thought differently of me, and as a result I’ve not been left trapped so much in loops of guilt or worry. Those meltdowns don’t linger as memories of significantly horrible events the way the ones I described earlier do.

Meltdowns are just one piece of autistic experience — an unpleasant and sometimes very difficult one, sure, but the hypersensitivity to sound and touch I feel when stressed is also the hypersensitivity that allows me to get so much joy out of the world when I’m excited. The energy and buzz that can make me writhe and flail in frustration is similar in feeling, in some ways, to the positive energy and drive I get when I’m really getting into a project, or about to do some enthusiastic public speaking. The electricity and anxiety that is part of the experience of being me (and autistic) is powerful, and can be scary, but is also what adds so much richness and focus to my world. I’m excited by how much we can all learn about different ways of being and experiencing, how to support each other, and what this diversity can add to the things that we all do.

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A version of this essay was previously published at https://medium.com/@sonyahallett.

Images © Sonny Hallett.

Image descriptions by Sara Liss.

Read More

Starting Points for Understanding Autism

Oolong
oolong.co.uk

Photo courtesy the author
[image: Photo (light-painting) by the author: a spectral outline
around a hand and arm, raised as if to flap.]

I believe that the best way to understand autistic minds is in terms of a thinking style which tends to concentrate resources in a few interests and concerns at any time, rather than distributing them widely. I wrote in some detail about how this explains the observed features of autism in Me and Monotropism: A Unified Theory of Autism. Here, I want to distill what this means for living and working with autistic people, expanding on the six starting points for understanding autism that I identified in ‘Theories and Practice in Autism.’

I’m writing in the first person here, as a late-identified autistic adult who has worked and talked with many other autistic people in various contexts over many years. I believe that everything I describe here is a common experience for most people on the spectrum, but not necessarily universal. Many will be shared to various degrees by some non-autistic people—there are very interesting questions about the extent that different thinking styles overlap; brains really are very diverse, and psychological classification is a messy business. References, reviews of research and further resources for each section appear at the end.

1. Coping with multiple channels is hard

This can be sensory channels or other information streams.

This shows up in many ways; some of the most obvious ones are social. If my attention is focused on something else, I may not be able to take in what you’re saying. If I’m focusing on what you’re saying, I may not be able to do anything else (or I may need to do something else to absorb excess attention).

Most people assume there are multiple channels of communication going on in any conversation: words, tone of voice, gesture and eye contact. They also assume an ability to hold various other things in mind while talking: social context, social rules, relevant background facts. This works most of the time, for most people, but causes endless confusion in conversations between autistic and non-autistic people. Be prepared for misunderstandings where someone missed out on one or more of the channels you thought were conveying information.

Be aware that autistic communication styles tends to be different, too, for much the same reason. We are expected to maintain multiple channels of communication in socially acceptable configurations at all times, despite missing a lot of non-verbal cues throughout our lives. It often takes conscious effort to emote ‘appropriately’, display expected body language and suppress urges to regulate ourselves with motions people might find weird… all while trying to make sure not to say anything daft. Learning to do all this can be a valuable social skill, but it takes a lot out of a person, and it just doesn’t always work. If you want someone to be able to relax, they need to be able to feel comfortable being themselves—even if that looks odd to you. Learn to read our body language as best you can, but be aware that most people often get it wrong.

2. Filtering is tricky and error-prone

Sometimes I can’t tune things out, other times I filter them out completely.

Filtering is an active process, and it becomes much less effective when our resources are consumed elsewhere. That means our filters tend to be at their wonkiest when we’re worn out or having to keep up appearances. Any work done filtering out unwanted stimuli leaves less energy over for anything else.

Being unable to filter can be intensely uncomfortable, especially if it’s keeping you from something you want to focus on. Please take care of the sensory environment: too much noise and clutter and stimulation can be exhausting, painful and impossible to work with. Sometimes it helps a huge amount to be able to spend some time in an environment where we can control our sensory input, and not have to filter anything for a while.

Some of the most satisfying, relaxing and productive times are when we can enter a flow state, our attention completely absorbed in an activity. At those times, we may filter out almost everything else. If we can’t get rid of enough distractions to begin with, it becomes impossible to enter that state.

3. Changing tracks is destabilising

Task-switching is hard, and new plans take work.

It takes time and effort to get going, to change direction, or to stop. In other words, autistic thought tends to have a lot of inertia: it resists a change in state.

This can be great for working through complex logical puzzles, learning large collections of facts or just getting intensely absorbed in anything, but it can be very inconvenient all the same. Pulling all our tendrils of thought out of one thing and directing them towards another takes much longer than it does for a lot of people, and sometimes it’s hard to make them go where we want them—let alone where other people want them. Give us warnings, give us time, let us recover.

Don’t expect an instant transition from one thing to another, especially if it’s unexpected. It’s hard enough changing tracks even when we know what’s coming. A sudden change of plans means we have to completely reset and work out how to deal with everything about the new circumstances.

4. I often experience things intensely

Usually things that relate to my concerns and interests.

When my attention is fully focused on something, my brain seems to throw everything it can get at that thing. I credit this with my senses often seeming to be more intense and detailed than most people’s. I seem to get more than most people out of being absorbed in my interests, in general; I think this relates, again, to flow states.

On the other hand, unexpected input sometimes really shakes me. This might be something sudden, or just something that doesn’t seem to fit; either way, I can’t ignore it. It’s been suggested that the main difference with autistic brains is that they just have their ‘surprise’ setting turned right up; I wonder if our tendency towards intense surprise comes from having fewer interests or filters active at any given time, and finding the unexpected more jarring because of the intensity of our focus.

Incidentally, one of the side-effects of being surprised a lot is that you do sort of get used to it. I’ve often known autistic people to seem less surprised by things other people seem shocked by.

5. I keep looping back to my interests and concerns

It’s hard to let things drop.

It’s in the nature of interests and concerns that you loop back to them. If you’re interested in something, things are likely to pull your attention back to thinking about it. Monotropic minds tend to get pulled back to the same loops of concern again and again, especially when they have unresolved questions. People are terribly confusing, so we often have lots of unanswered questions. Sometimes a question might have been adequately answered really, but it still doesn’t quite feel like it, so we need to ask anyway. Other times, people are just impossible to predict, and there is no way to lay those worries to rest. These things can haunt us for years, and carrying them around can really sap your energy.

Still, I like how things are so interesting. Fascination is a fun thing, and I’m glad people have hardly ever tried to talk me out of my fascinations. I like working stuff out, and learning new things, but I also like to just get lost in things sometimes. Sometimes people are baffled by the sorts of things I like to do and learn, but really it’s their loss.

6. Other things that drop out of my awareness tend to stay dropped

I may need reminders.

I really need some kind of system to make sure things I’m supposed to think about come back to my attention. It’s so hard keeping tabs on lots of things at once, I’m bound to drop some of them if I don’t get reminded at the right time. This is complicated by the fact that if I’m in the middle of something, I really don’t want to let myself get pulled out of my attention tunnel for anything I can possibly put off.

This means there are all sorts of things other people might expect me to be thinking about, which I might not be unless I’m getting the right prompts. That includes things I genuinely care about, by the way; I hope nobody assumes I’m indifferent to things just because I fail to think about them. I just have so much else going on in my head!

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I understand all of these features as manifestations of a monotropic thinking style: the more a brain concentrates its resources in a few interests and concerns, the more we should expect these to be true. Other theories can predict and explain many of the same features (see below) but I’m not sure that any other single theory leads us to all of the same predictions.

All of these taken together add up to a world that can be very difficult to deal with. It is no wonder so many autistic people experience so much anxiety, confusion and overwhelm. Our capacity for joy and focus can be some compensation for this, but it is often difficult to navigate a world dominated by people with relatively typical brains. If people can’t or won’t understand and accommodate our needs, problems accumulate. Discomfort can get ramped up higher and higher, until we have to escape or else we’ll melt down or shut down. This can last for a long time, and it is so often avoidable. I hope what I have described gives you some good starting points for working out how.

With the right strategies and understanding in place, most autistic people can thrive. Without them, life can be incredibly difficult, and much of what we have to give to the world gets lost. I wouldn’t change very much about my brain — I mostly like being who I am. I would, however, like to change many things about this world and how it deals with people who think differently.

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If any of this helps you make sense of things, or changes how you relate to autistic people you know, I would love to hear about it. More important than that, please let me know if there’s anything here that doesn’t ring true for you! These ideas are being actively developed, by myself and others. There may be things we are getting wrong, and there are certainly things we haven’t fully worked out yet. One of the things I am especially interested in working out is what this all means for teachers, and I may soon produce a tailored version of this piece augmented by examples from educational practice.

Research, References, Resources

There is empirical work to be done to establish how well most autistic people feel these descriptions apply to them—beware anecdata, and all that. So far the best direct evidence for Monotropism as a theory of autism is probably Julia Leatherland’s unpublished PhD thesis, Understanding how autistic pupils experience secondary school, which found that Monotropism accounted for more of pupils’ reported experiences than any other single theory. I believe the basic features I describe here are all well-supported both by psychological research and the accounts of autistic writers, but Monotropism as a theory is still crying out for experimental work.

Notes for each of my starting points follow.

1. Although it took until DSM-5 for perceptual differences to be included in diagnostic criteria, difficulty dealing with multiple sensory streams is attested since early autism research. Lovaas et al were not the first to record it in 1971, and see Marco et al (2011) for a systematic review. Mongillo et al (2008) found that difficulties with speech processing—perhaps unsurprisingly—were associated with social difficulties, and includes the fun fact that autistic people are much less susceptible to the McGurk Effect.
2. It is well known that filtering is an active cognitive process, keeping the conscious mind from being overwhelmed with too much data. In the Predictive Coding model of the mind, much of what our brains do can be seen as filtering: non-conscious processes work on predicting the input coming in, and only what they fail to predict makes it through to conscious awareness. See Friston & Kiebel (2009) for a technical account, and Van de Cruys et al (2014) for more on the idea of autism as being a manifestation of excessive surprise. Karl Friston’s video on embodiment and Andy Clark’s book Surfing Uncertainty are both excellent introductions to this general approach to cognition, with a bit about how it currently seeks to account for autism.
       It seems natural to expect filtering to take energy, in the sense of both requiring and exhausting cognitive resources. So far I have only found research exploring the former, and not in an autism-specific context: Drummond et al (2012) found that sleep deprivation reduces visual filtering ability; Hasson et al (2013) found that a combination of emotional exhaustion and stress reduced tolerance for loud sounds.
       The National Autistic Society has a pretty good page on autism and the senses in general. On flow states in autism, see Milton (2017) and this video, also by Damian Milton.
3. This is normally talked about as an aspect of executive function, which has been extensively studied with reference to autism—see e.g Hill (2004), and occasionally posited as an underlying explanation for all autistic cognition—see Russell (ed.) (1997). As I wrote in Autism and Executive Functions, I find it unconvincing as an overall theory of autism, and a bit of a blunt instrument for describing particular difficulties, but it remains an important idea.
4. Intense experiences are at the very heart of the Intense World theory of autism (Markram et al 2010) which has important points in common with the Monotropism account. Its proponents are oddly reliant on a rodent model of autism, however, and see Remington & Frith (2014) for some very cogent criticisms, including the fact that unlike monotropism, it only seems to account for hypersensitivity in autism, where hyposensitivity is also commonly reported. Mottron et al (2006) write of enhanced perceptual functioning in autism, backing up the impression of sensory input often being both richer and more detailed in autistic people.
5. Despite ‘restricted’ interests being a feature of accounts of autism going right back to the beginning, the nature and role of autistic interests has been chronically under-researched, and is very poorly accounted for by most theories of autism. However, see Grove et al (2018) for a study demonstrating the shock finding that pursuing their passions is a positive thing for autistic people’s wellbeing. The focused interests of autistic people are often called ‘special interests’, which is fine as long as you think along the lines of Special Interest Groups in tech, but not so much if you think of them as some weird, incomprehensible autistic thing, probably best suppressed. Mostly I prefer the term ‘passion.’
       On the anxiety front, Wigham et al (2014) found intriguing links between anxiety and repetitive behaviours. Both can be seen through the lens of perseveration, as can the way we keep returning to our interests. The idea that autistic anxiety is often associated with social difficulties is well studied—see e.g. White and Robertson-Nay (2004).
6. This is another thing that’s usually discussed under the heading of ‘executive dysfunction’, not all that informatively. Mazfinch on Twitter has a handy list of possible reminder systems.

Acknowledgements

My partner Sonny Hallett has contributed greatly to my thinking about all this, and coined the useful phrase ‘loop of concern.’ That’s also them in the photo at the top wearing an excellent dinosaur jumper. The underlying concepts were largely formulated by my mother Dinah Murray, with Mike Lesser and Wenn Lawson. Damian Milton, Nick Chown and Richard Woods have all also contributed notably to my understanding.

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This essay was previously published at Medium.

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The World Is Such a Loud Place And It Seldom Stops Talking

Photo © dan_giles | Flickr / Creative Commons
[image: A red lit-up mute button featuring a crossed-out microphone symbol.]

Sara Earhart
seekingsara174.com

Hearing is the sense that gives me the most trouble to the point that I often wish I had a mute button for the world around me. Sometimes I even wonder what it would be like to have a cochlear implant that I could detach when sound was just too overpowering. The world is such a loud place and it seldom stops talking.

Some days are better than others. Sometimes my brain does a better job at filtering sounds toward the back of my mind, but most days the sound comes at me all at once in a jumble of confusing, overwhelming chaos. Each sound jockeys for position at the front of my mind as each insists I pay close attention to its deafening shouts. It’s an exhausting experience to be constantly inundated with such a loud, insistent world without the ability to filter any of it out.

Even now while I write this post in a relatively quiet room, sound is everywhere. The high-pitched chirping of a bird outside the window is joined by the electric whine of the TV (which is off), the shower running upstairs, a family member walking on the floor above me, a goose in the front yard honking incessantly, the walls and windows settling, the wind swooshing through the trees out back, an electric toothbrush pulsing, a door opening and closing, the hum of the ice maker, the neighbor’s car door slamming…All loud. All insistent.

I am very easily startled, overwhelmed, or distracted by sounds. I’m likely to jump at a sudden loud noise, and it can often be very painful. A lot of sounds are physically painful to me: fireworks (which I also feel as a punch in the chest), alarms, sirens, anything shrill, etc. Some are less painful but more overwhelming; those make me feel like I’m drowning: crowds, loud music, revving engines, etc.

These are some of the most extreme sounds for me: fireworks, fire alarms, sirens of any kind, pitch-bending (sliding between notes), dentist drills, wood saws or drills, squealing bike brakes, shrill voices, whistles, people whistling, motorcycles revving, airplanes overhead, loud voices/shouting, loud and unexpected sounds in general, high-pitched noises, tapping or clicking, people talking behind me, crowds, out of key music, hairdryers, vacuum cleaners…

While I doubt that these things are pleasant for most people, they can be absolutely excruciating to me.

It’s important to note that auditory sensory overload isn’t always related to sounds I don’t like. When I’m overstimulated, I can’t handle any sound. Not my favorite song or an otherwise pleasant white noise or even the sound of a loved one’s voice. At that point, any sound is toxic until I recover.

Here are some examples of my intense auditory sensitivities to give you a better idea of my experiences:

LOOPING

Sometimes a noise or sound gets stuck in my head. I call this “looping” and it can be maddening. Think about something like nails on a chalkboard. (Even typing that makes me physically uncomfortable. But that cringing sensation that a lot of people experience is how many sounds feel to me!) Imagine that sound getting trapped in your head and sort of echoing again and again and again–long after the actual sound has passed. This happens to me fairly frequently and it’s extremely painful and distressing.

ELECTRONICS

I did an experiment with a friend once while studying abroad. After months of being annoyed by the high-pitched whine of the old TV in the corner of the dorm kitchen, I finally grumbled, “It’s so LOUD!!” My friend looked at the sumo match on the TV, back to me, and then back to the cheering crowd on the screen. “Loud? Ok, I’ll turn it down.”

I shook my head. “Not the program. That shrill sound that comes from the TV.” He cocked his head and muted the TV–listening intently. To my surprise, he said he couldn’t hear it. I was completely shocked.

“You can’t hear that? Seriously? It’s all I can hear…” We decided to do an experiment. I turned my back on the TV. He kept the volume muted and silently turned the TV on and off and I told him whether it was on or not based on the whining sound. I left the kitchen and started to walk down the hallway, calling back to him “ON! OFF!!… ON! OFF! No, STILL ON! Ha, tricky!” as I passed room after room.

I made it all the way down to the end of the hallway where I could still hear the faint sound of the shrill TV. When I got back into the room my friend was shaking his head. “Is that why you always turn it off when no one’s watching it? I thought you just really hated sumo or something.”

FIRE ALARMS

One year while teaching in Japan, my desk was located directly beside the fire alarm. I didn’t realize this because it looked different from the ones I’m used to seeing. (In some ways I’m glad I didn’t know because if I had, I may not have been able to relax.) One day, we had an unexpected fire drill and the alarm blared directly at me. It was actual physical agony. I can still remember the physical pain throughout my body and the extreme nausea: I almost threw up. I was on edge for the rest of the day—jumpy and fidgety until I could go home and sit in a dark, quiet room with both earplugs and headphones.

When I was a kid and there were safety drills at school, I would be a complete wreck waiting for the alarm, during, and for the rest of the day. It would make me anxious and physically ill for the entire day. I remember trying to be “tough” like all the other kids who could walk down the hallways laughing and joking, but I always had to shove my fingers in my ears and grit my teeth as I raced out of the building.

COPING

• Ear plugs: I wear earplugs while I sleep and I have done for at least a decade. I can’t fall asleep without them; I can’t even begin to relax and let down my guard without them. I’ve started to bring earplugs everywhere I go and wear them in restaurants especially.
• Noise-canceling headphones: When I first got my headphones, I wore them every chance I got but found that I panicked when I had to take them off for work. I think they actually made me more sensitive to sound and that was a horrifying discovery. Now I only wear them when I really, really need to avoid a sound that earplugs just won’t help with.
• Stimming (Blocking or recovering from bad sensory input with good/neutral stimuli): Humming or singing softly to myself is one of the most effective tools to help me deal with auditory overstimulation and sensory overload. This works by blocking out other sounds and giving me some control over what I’m hearing. Unfortunately, it’s something that society has made me feel uncomfortable doing in public, but sometimes I can’t help but do it to survive. I’m getting better at doing it in situations where I need to.
• Silence: I bathe in silence whenever possible. Silence is a breath of life.

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The Protective Gift of Meltdowns

Maxfield Sparrow
unstrangemind.com

Photo © 2017, Maxfield Sparrow
[image description: a turtle in the middle of the road on a hot, sunny day.
His skin is dark with bright yellow stripes and his shell is ornate,
covered with swirls of dark brown against a honey-yellow background.
The turtle is rushing to get across the street and his back leg
is extended from the speed and force of his dash toward freedom.]

I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time—sometimes minutes, but just as often entire days—afterward, when everything is too intense, and I am overwhelmed and exhausted and have to put my life on hold while I recover.

I hate the embarrassment that comes from a meltdown in front of others. I hate the fear that bubbles up with every meltdown. Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

We Autistic adults and teens put a lot of energy into figuring out what will lead to a meltdown and working to avoid those things whenever possible. Parents of younger Autistics also put a lot of energy and work into figuring these things out, both to try to keep triggering events out of their child’s life, and to try to help their child learn how to recognize and steer around those triggers themselves. Outsiders who don’t understand autism will make accusations of being overly avoidant and self-indulgent, and accuse our parents of spoiling and coddling us.

I have written about how shutdown can alter brain function in unwanted ways. Meltdowns also have their dangers, and can alter brain function over time. A meltdown is an extreme stress reaction, and chronic stress can damage brain structure and connectivity.

But meltdowns serve a purpose, just as another unpleasant experience that can also re-wire the brain if it continues chronically and unabated—pain—also serves an important and very necessary purpose.

Pain is an alarm system that helps us avoid bodily damage, and urges us to try to change something to protect our body. While pain is usually unwanted and something we seek to avoid, without pain we would not live very long because we would not have such a strong drive to eliminate sources of damage to our bodies.

Meltdowns are alarm systems to protect our brains.

That idea is so important I gave it its own paragraph. And I’ll say it again: without meltdowns, we autistics would have nothing to protect our neurology from the very real damage that it can accumulate.

So often, I see researchers and other writers talking about meltdowns as if they were a malfunction or manifestation of damage. I strongly disagree. It is easy for an outsider to view a meltdown that way, because all they see is an unpleasant outburst that makes their lives more unpleasant or difficult. They see someone who appears to be over-reacting to something that they don't consider such a big deal. They see someone "immature," someone who needs to grow up, snap out of it, or get a “good spanking” to teach them to behave.

When a person doesn’t themselves experience the hell of having a meltdown, that person can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

Let me ask you something (this is a thought experiment and you don’t have to actually do this, but you might understand me better if you follow along physically): Take your finger and poke the softer flesh on the inside of your thigh with it so that you are pressing the tip of your fingernail into your thigh. Don’t actually damage yourself! You’re just looking for a reference sensation. Poke it about as hard as you might press a button to ring someone’s doorbell.

If you have long, sharp fingernails that might have hurt a little bit (I hope you were careful. The goal here is not to injure yourself—just to create a physical sensation.) It was a quick poke, so it probably didn’t even leave a mark behind, no matter how long your fingernails are.

Now do the same thing to your gums, either above or below your teeth, in that area between your teeth and the inside of your lips. Oh! You couldn’t even poke it as hard, could you? (Do be gentle with your gums, please. I repeat, this is not about harming yourself. You don’t even have to poke yourself at all if you don’t want to. You know your thighs and gums.) You know, without lifting a finger, that I am telling you the truth when I say your gums are much more sensitive than your inner thigh.

And you are not “over-reacting” when you have more pain response in your gums than in your thigh, right? It’s easier to hurt your gums, so your reaction to the same stimulus is much more intense when it is applied to your gum than to your thigh. You are not self-indulgent or spoiled. You don’t need a good spanking to get over how sensitive your gums are. You just need to take extra care that things don’t poke you in the gums.

So what’s my point? If you are not Autistic—and even more so if you are pretty close to neurotypical —your neurological wiring is more like your thigh. Life pokes at you a lot, and you don’t even notice it. Much of life’s poking is fun for you. Some pokes are less recreational, but present satisfying challenges. So when you see an Autistic person having a meltdown you might not even recognize the pokes they have been processing all day long, because you as a non-autistic person don’t even feel them.

But our Autistic neurological wiring is more like your gums, except not even that predictable. Some of our senses may be “hyporesponsive,” and we need to stimulate them to be aware that they are even functioning. Some of us spin around, or pace in circles. Some of us move our hands or fingers in ways that make us feel better. Some of us blast loud music with a heavy bass and drum component to it. Some of us rock back and forth. Our wiring demands more input than the world’s regular pokes can give us.

Some of our senses are “hyperresponsive”  and we need much less stimulation. Life’s pokes are like fingernails grinding into our gums and we need to make it stop because we cannot bear the pain. Loud sounds or high-pitched sounds get to some of us. Others are overwhelmed by the struggle to understand speech when more than one person is talking at the same time. Some can’t stand textures of fabrics, or foods.

Most Autistic people I know experience a complex mixture of hyporesponsiveness and hyperresponsiveness. Most have some senses that are both hypo and hyper responsive, changing over time. I can’t give you any single idea of a sensory pattern for an Autistic neurology, because we each have our own combinations of needs.

Normal Human Variation Includes Variant Emotional Sensitivity Levels

But when it comes to meltdowns, it’s not just sensory input (or lack thereof) that will set off an Autistic’s neurological warning system and throw us into meltdown. What inspired me to write about this topic was reading something I had written last year, after spending a few months living in an emotionally abusive situation. The man I was living with figured out very quickly how to manipulate my compliance triggers; he even commented specifically on how easy it was for him to physically subdue me once he spotted the compliance “fish-hooks” that childhood had left embedded in me.

I’m not going to go into much detail about what he did, for the same reason I shy away from going into much detail about my decade of childhood therapy: I am working on removing those hooks from my flesh. The last thing I want to do is instruct others as to where those hooks are embedded, and how to use them to steer me like a puppet.

My only point in mentioning my abuse is that I realized—after the fact—that my meltdowns had been sending me a very clear message, one I should have heeded immediately. Instead, I did what I always do: I interpreted my meltdowns as a sign of how damaged I was, and how much I needed help to gain self-control. Most of my life, I’ve allowed lovers to convince me to try to medicate my meltdowns into submission. I hated those meltdowns, because they seemed to illustrate how flawed and awful I was. My thought process went like this: I melt down because I’m Autistic and meltdowns are frightening and horrible and who would want to be my romantic partner? I can’t blame people for treating me badly and wanting to get away from me, because look at these meltdowns!

My experience last year helped me to finally realize that I was looking at things backwards.

I don’t melt down because I’m Autistic.

I melt down because something in my environment is intolerable, and I am having a normal reaction of pain and/or anxiety. That pain can be from something physical, like an intolerable temperature in the room or a sound that is piercing my eardrums and making me nauseated. Or it can be something emotional, like internal feelings of frustration or external abuse.

Everyone has meltdowns. It’s not just an Autistic thing. But our wiring is different, just like the wiring is different between your thighs and your gums. Some things that make neurotypicals meltdown don’t bother me. A whole heaping lot of things that don’t bother neurotypicals make me meltdown terribly. I’m not deficient in some way; I’m wired differently.

Meltdowns Protect Us From Harmful Situations and People

One of the things I learned last year is that, even when I can’t recognize abuse because I have alexithymia, and even when I can’t recognize abuse because my compliance training is kicking in full-force, my body and nervous system will send me the message via repeated meltdowns.

What I wrote a year ago:

"If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up. 

"An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same Autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns. 

"All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome. 

"I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner. 

"I finally realized all this today. Everything suddenly connected. 

"And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.

So… I still do hate meltdowns. More specifically, I hate having meltdowns. They are hard on me, physically and emotionally. They are embarrassing, messy, frightening.

But I am grateful that my body has a way to tell me when I’m in a bad situation, even if my mind is not capable of figuring it out yet. I vow to respect and honor my meltdowns. This is not the same as excusing my behavior. This is not the same as giving myself free reign to do whatever, whenever.

I still want to do whatever I can to avoid having a meltdown. I still want to work on my ability to detect a meltdown on the horizon, and remove myself to safety before things go too far.

But I also vow to listen to my meltdowns and pay closer attention to my triggers. Meltdowns teach me what my nervous system can handle and what is too much for me. Meltdowns teach me how to take care of myself. Meltdowns teach me what my nervous system needs. Meltdowns highlight areas of my life that are not on track.

Sometimes my depression shows me that something is wrong in my life, but sometimes depression is just like a wildfire, burning out of control. The same is true of my anxiety. But I have learned that meltdowns are always highlighting something I need to address.

Meltdowns protect me. Some aspects of my neurology make me more vulnerable. Some remnants of childhood experiences leave me more vulnerable. Meltdowns fill that gap and send me messages about my life that can help me protect myself.

While I will never enjoy having a meltdown, I promise I will always value the protective gift meltdowns bring me

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An Autistic Burnout

Content note: This post discusses suicide and suicidal ideation (thinking about suicide).

Photo © Lee | Flickr/Creative Commons
[image: Photo of end-stage burning match.]

Kieran Rose
www.theautisticadvocate.com

I've struggled massively with writing this.

It's ironic really.

It's taken me six weeks to start writing an article about Autistic Burnout, because I'm going through Autistic Burnout...

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person?

The sad truth is that so many Autistic people, children and adults, go through burnout with zero comprehension of what is happening to them, and with zero support from their friends and families.

If you're a parent reading this, I can confidently say that I bet that no professional, from diagnosis, through any support services you're lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is.  If you're an Autistic person, nobody will have told you about it either, unless you've engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person. It affects us pretty much from the moment we're born to the day we die, yet nobody, apart from Autistic people really seem to know about it.

I had some parents come to see me. It was just a chat, their little boy was struggling in school, and they were looking for some advice. Somehow we got onto talking about my own experiences at school, then onto my suicide attempt at fourteen (which I describe in graphic detail in How to hide your Autism and An Autistic Education). My story was horrifying enough to them, I imagine—but I think what horrified them most was what had led me to place in the discussion: They'd never heard of Autistic Burnout.

When I described to them what autistic burnout is, they actually recognised a recent episode where it had occurred with their son. And the more they looked back at his life, the more they started to recognise a pattern; they started to see how life for an Autistic person is really a series of peaks and troughs. They now see how frequently he has been through burnout, and how they had pushed him to keep going through each episode, unwittingly, when he had no way of communicating what was happening to him.

So, what is Autistic Burnout?

Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.

A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more 'typically Autistic.' As a child, milestones they had passed—walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong, though, as it does not take into account that it can be—and is often—temporary, and it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, and it is not a permanent return to a former or less developed state, as many would have you believe.

There are, in my opinion two distinct types of Autistic Burnout that feed into each other.

The first is often termed Social Burnout. This is a frequent occurrence: where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won't be identical for everyone, but it certainly will be similar). This can happen at any stage, from infancy through old age.

The bell rings for the end of the school day, the children are filing out of school, so I duck out into the woods and light a cigarette.

I need the noise muted and filtered; the wind does that, carrying the hubbub of the end of day away from me—I'm an expert at this by now, staying downwind of noise. My whole body is tired, lead boots weighing me down, my brain slowed distinctly, reactions are slack.

A day of talking and socialising—Conversations with adults and children, timetabled and spontaneous. Running the conversational scripts in my head to full capacity all day long. 

Surrounded by noise; screaming children in the playground, shouting children, singing children, musical instruments, banging and clashing, the general commotion of the classroom; and over the top, the dumpf-dumpf-dumpf of my heart in my ears and in my chest. 

The strip lights overhead, flickering constantly in pulsing waves, each one shooting through my eyes and down through my body; I can physically feel each pulse humming and vibrating. 

A vast array of colours and patterns on the brightly coloured walls, covered with brightly coloured work. The sun glaring through forty year old, grimy windows, diffracted around the room, while a billion dust particles dance captivatingly, confusing my already overwhelmed eyes. 

And over the top of it?

Masking.

Suppressing my reaction to all of this, the urge to scream and scream and scream till I explode—wanting it all to go away. My face is still, good eye contact made, no matter how much it hurts, being touched constantly, leaving my skin feeling like it has been repeatedly pressed by a molten hot branding iron. 

It's not over yet though. 

Three quarters of an hour of tidying and prep for the next day and it's time to leave. I get a lift with a colleague as the buses are so infrequent, so I have to maintain conversation. My colleague is lovely though and can generally sense somehow when I can't speak, and a ten minute car journey often passes in a vaguely comfortable silence. It's sometimes like a tiny piece of decompression time before i get home. 

When I get home there's nobody there. Sometimes turning the key in the lock is the hardest thing to do, it's so heavy. The weight of the bag on my back pulling down.  My lead boots heavier and heavier. 

I get through the door and drop my bag. I crawl and stumble up the stairs and make it to the bedroom, collapsing on the bed without even the energy to remove my shoes, my eyes are heavy, exhaustion pulling my lids shut. 

Several hours later when Michelle comes home, she finds me and wakes me. I have enough energy to make it through the evening, just. My conversation is muted though, like when someone asks a child what they did at school and they reply with 

"Nothing." 

I want to respond, I want to engage, but I have neither the ability or the energy.
I'm 26 and I've been doing this for as long as I can remember, practically every day the same.  

The days when i can't do it, when I can't collapse in a heap, the worse it is the following day... 

Three years diagnosed and I have no idea what is going on, this is my normal.

Can you imagine this, day in and day out—this is just everyday life, and this was pre-me having children. I've got three children now and they are the light of my life, but how they have impacted my ability to recover day after day is immense. I could no longer collapse—I didn't have the capacity.

The responsibility of having one, then two, then three children led me to have to Mask and suppress even more, fight through and resist the extreme, overwhelming shutdown my brain and body wanted to go into.

This has become a sick joke to me.  When people message me and ask me how I am, my response is:

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Autistic Burnout is exactly that;  The shutting down of mind and body.

If you've ever had a problem with a computer and it's had to go into safe mode, that would describe what happens to the brain: it runs on limited function, not all services are available, and its access to the Internet (my Rolodex, as I described in The inside of Autism: The world inside my head) denied and unable to connect. No little white bars to indicate how strong or weak the signal is, because it's just not there.

Physically I often imagine this as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slows, and breathing distributes evenly and slowly, hovering on the precipice between sleep and death.

Except through this all, you are awake and expected to function, expected to get on and live your life, so you repeatedly go back and do the same things over and over again, put yourself through the exact same scenarios that caused you to feel like this in the first place, rinse and repeat.

Another aspect of this is that Autistic people, for some reason, possibly related to Masking and wanting to fit in, can be incredibly eager to please. Part of that eagerness, especially for those who don't fully fill the Pathological Demand Avoidance profile, is often an inability to say "No" to people.  So we take on more and more, we allow our plates to get fuller and fuller, our anxiety heightens, our sensory processing becomes more difficult to maintain, our Executive Functioning abilities spin out of control and again this attributes to burnout. We often aren't terrific at juggling plates.

Jeanette Purkis, who is an Australian Autistic, an absolutely wonderful writer and a Member of my network organisation, The Autistic Cooperative, has written an excellent piece called "‘Too Nice’: Avoiding the traps of exploitation and manipulation." In it, Jeanette says:

"There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front, and do not often do things like manipulation and deceit. We generally do not lie—although many autistic people are capable of lying if they feel the need—but usually it doesn’t come naturally. 

Neurotypical people (or ‘allistics’ if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level. It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists."

These differences are not visible to an unaware or undiagnosed Autistic person, so it leads not only to the full plate, but offers up the Autistic person to all levels of potential abuse and manipulation through compliance. I could talk right now about Behavioural Therapies such as Applied Behavioural Analysis (ABA) or Positive Support (PBS) and how they take advantage of the Autistic being eager to please and open to manipulation, but I'll save that for another day.

I mentioned in An Autistic Education, about the fallacy of parents repeatedly sending their children into school, making the same mistake over and over again, watching their child crumble before their eyes, yet unable to break the cycle even though they can see what is happening to them: 

You have to go to work, as much as you have to go to school.

Society demands it.

Society demands compliance.

Autistic people are doing the very same thing. We repeat processes constantly which wear us down mentally and physically constantly, each day, without a break. Some undiagnosed people unwittingly develop strategies to cope with this, the Mask again, rearing it's head, but it all catches up eventually.

And all because we're made to think that we have to. 

This is what people do...

Society demands it.

Society demands compliance.

As I mentioned earlier, burnout covers all age groups. Autistic babies suffer Social Burnout as much as children or adults. Babies who do not wish to be touched, babies who are forced into eye contact, babies who are picked up and manhandled, babies who have even less of a filter than Autistic children or adults to block out the overwhelming sensory sensations they are put through.

So, if this is the every day normal for an Autistic person, to one degree or another, from birth to death, what happens after an extended period?

The second type of Autistic Burnout.

You crash, and you keep crashing.

If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months, or even sometimes years.

This is extreme Autistic Burnout. It's usually the result of the day-to-day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function.

When I was fourteen, my Autistic Burnout was triggered by a combination of things. I'd reached the end of my tether with school—I just couldn't hack it any more, couldn't hold in the pain it was causing me any more. I was in a constant state of sensory overwhelm; I was isolated, confused and didn't know what was happening.

My Grandfather had recently died too—which was a massively life-changing event for me. 

I've mentioned that touch burns me? 

Well at that point, the only person on the planet who could touch me without it hurting was my Grandfather. Albert Ferguson was the kindest, cuddliest man I have ever known. I remember my eldest sister (who is also Autistic) and I were forever clambering over him, rubbing his shiny bald head, breathing in the smell of his tobacco and 'two fingers' of single malt whiskey. I'd lay there silent in his lap for hours while he'd regale me with regimental details, battalion names, and numbers from his time in Burma during World War II—and days later he'd test me on those details, delighted when I remembered them correctly.

When he died he left a huge gaping cavity in my heart and my mind. 

One of the worst parts was that he was hospitalised for a long time before he died—months—and I was not allowed to see him. I was desperately sad that he'd gone, but I also incredibly aware that now I had nobody to touch or be touched by. I resigned myself to a life of pain at that point, could not conceive that I would ever find anyone else who wouldn't physically hurt me.

So this combination of grief and sadness, along with the overwhelming confusion of not knowing what was 'wrong' with me, why I couldn't really connect with anyone, why people singled me out or played tricks or used me, of what the hell was wrong with me and why I just kept hitting this wall over and over again, was what led me to crash and burn out. My physical body and mind started shutting down. I could feel each system in my body closing off as gravity got heavier than it had ever been. I didn't know what to do, did not understand what was happening to me, and I had no way to communicate this.

It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone.

I did not want to die, I've never wanted to die.

I needed to step out. 

I needed to remove myself from the environment and take myself elsewhere;  I needed to escape.

But the only way I knew how to do that was to die. So I tried.

And what I was feeling was not depression, I know that now. 

Some researchers are starting to listen to Autistic people and are starting to recognise that clinically, Autistic Burnout shares a similar presentation to Depression, but is a completely separate thing. They are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high autistic suicide rate, and also ties into other mental health issues that are identified—sometimes wrongly—in Autistics, and also how a lack of Autism Acceptance plays a huge part in mental health too.

The lack of distinction between Autistic Burnout and Depression; In fact the lack of recognition of Autistic Burnout at all, outside of the Autistic Community, has caused many problems for Autistic people. Many who have been identified as depressed have been and still are being put in psychiatric units, psychiatric care, drugged and then have developed Mental Health issues—when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.

I'd been taken to the doctor multiple times by my Mum, and had been on various types of antidepressants from the age of twelve, which, looking back, is actually quite disturbing—but probably indicative of a time where so little publicly and medically was known about mental health, let alone Autism.

I cannot emphasise enough how important it is to make the distinction that Autistic Burnout is a separate thing from Depression and how important it is that Autistic Burnout starts being recognised and addressed in Society.

None of this is meant to imply that an Autistic person cannot be depressed—that is not the case at all.

Along with the things that cause anybody to be depressed, prolonged burnout can definitely lead to a depressive state, as indeed can a lack of Acceptance. It is hard for that negativity to not be absorbed, especially by people who are emotional sponges and highly reflective of the emotional state of people around them.

This is also definitely not to say that a suicide attempt comes along as part of the package of Autistic Burnout, because it doesn't always. I've had periods of intense burnout where I haven't taken that measure. It is however indecently common amongst teenage Autistics diagnosed or undiagnosed; and those who are diagnosed Autistic later in life.

Recent studies show that prevalence of Suicide attempts amongst Autistic people stands at 35% of that population, with suicidal idealisation at 66%. We also know that approximately 10% of all suicides are by Autistic people—bearing in mind we only make up 1% of the population, supposedly. I would hazard that the rate is higher in reality.

I'll talk a little more about suicidal idealisation later.

***

Extreme burnout comes fairly regularly during an Autistic's life, and there is a school of thought amongst the Autistic Community that when Autism first becomes 'apparent' to parents who don't know what they are looking for and have zero frame of reference—you know, the old "They were a perfectly normal toddler, then they had their MMR..." that the child is undergoing Autistic Burnout, and that their apparent "Autistic Regression" is because they have had some kind of event—starting nursery, going to school, home life changes, something sensory—it could be anything for each individual child, some major (to them) change that has overwhelmed them to the point that their Mask (which starts establishing itself very early on) has completely dropped off.

The Mask coming off is exactly what happens during the Autistic Burnout period. Your Autistic traits become more obvious as your brain goes into Safe Mode. You may become more inflexible, your ability to 'mock' making eye contact may disappear completely, your ability to socialise may be drastically reduced or go completely, you may sleep more, want to be on your own more, and bury yourself. Life just gets significantly harder and gravity, as I mentioned before, just pulls you down more and more.

I've left my job. 

Well, my job has left me. 

I was happy there once, for a long time. Then the rumbles of change started, people losing their jobs, major restructure. 

My performance dips, I grow tardy and try to cover it up.  It's halfheartedly noticed and commented on, which just makes my anxiety worse, everyone really is too worried about their own jobs though. 

I spend day after day not doing anything, other than pretending to work, because I'm not coping. My life is spiraling out of control and all I can think about is the look of horror on my Wife's face when I tell her I'm jobless. 

The lack of communication, the vague realisation that the people you work with, the people who have actually helped make life feel sort of good over the last few years are my competition now. All of a sudden it seems like everyone is Autistic, nobody makes any eye contact with each other. 

My replacement, from elsewhere, sits opposite me, I'm to train him. 

I'm offered my job, but a long way away. It feels like the final slap in the face. They know I'm Autistic, they know I have Meniere's disease and can't go that far on the bus—what'll be a two hour journey every morning and night. 

I walk out. I ride the bus home. I go to bed. 

I don't know what to do.

Then the click. The flick of the switch. I feel it deep inside me. I recognise it with abject horror, i remember the feeling. I remember the lack of self control. My mind goes into Safe Mode. 

What to do? How do I explain this to Michelle. I clutch at my throat and my words are gone. 

They come back a time later and I'm able to tell her. 

The horror I imagined was there.

But also love, so much love in those deep brown eyes.

I was safe in them. The only eyes I've ever been able to look at.

Eyes I can distinguish the patterns in and lose myself in.

I clutched her tight and the Mask dropped off.  

I heard it slide to the floor and crack in half.

The next few months were like wading through treacle, physically, mentally, and emotionally—but equally I was wound tight as a spring. My sensory sensitivity was incredibly heightened, I couldn't tolerate noises, smells, too fast movement, anything really.

Doing the simplest of things exhausted me, and still at that point I had no real understanding of what was happening to me. I was an Autistic man on anti-depressants for the umpteenth time of my life, completely not depressed, but not knowing how else to explain it.

The truth is, I was relieved not to be at work—it gave me the opportunity to switch off, which I needed, desperately. Had it not happened I think I may have looked at the suicide option again.

As it was around nine months later I started to wake up again—my mind and body felt more alert than they had in years. 

Michelle and I have talked extensively about that period, and the period after. and she sees the difference in me. She recognises that I Masked an awful lot with her from the moment we met, despite my attempts not to, and doesn't see it as me lying to her; she understands that I was doing what I did to survive, and often unconsciously.

My period of burnout saw me unable to function really at all. I was kind of a vaguely absent father—there, but going through the motions, rather than actively engaging.

We struggled financially, I started proceedings for constructive dismissal, but was so crushed and lethargic, and the proceedings were through a Council process which was massively bent in the Council's favour, so we gave up.

I can honestly say that those months were tortuous. We came within a hairs-breadth of losing our home. I expected Michelle to ask me to leave and wouldn't have blamed her if she did. But somehow we came through it and I came out of it.

I came out as someone desperate to know what had happened to me. The pieces were falling into place that there must be a better way, there must be reasons.

So I turned online and found Autistic people. I started talking and learning, realising that ideas and narratives that had been floating around in my head actually existed and had names—things like Neurodiversity.

I found the Autistic community.

I stumbled into this world; metaphorically, my eyes shielded by my arm from the glare of Autistic gold shining back at me.

I've not looked back since.

***

I said earlier I wanted to talk more about Autism and Suicide. 

Sadly the two seem to go hand in hand.

But not all suicide amongst Autistic people is directly attributal to Depression, because not all Autistic people are depressed, as I mentioned before.

Earlier I touched upon my experience at fourteen and explained how it was less an attempt to end my life and more being backed into a corner and it being the only way to get away from the situation I found myself in.

Anecdotally, I have talked to a significant number of Autistic people about this (a few hundred) and have found that their experiences matched my own—not only in the 'why' they had attempted suicide, but also in that, like me, they are pretty much constantly thinking about ways they can do it.

The noise of the traffic is too great. 

The cars are screaming past, one of those motorbikes that sound like giant broken hairdryers is gunning its engine unnecessarily. 

The sun is glaring down upon me, the warmth is nice but the light is too bright, too strong and I don't have my sunglasses. 

A throng of people are walking round, I'm like a rock in a river with the current parting round me, but I'm being buffeted and jostled, my body is burning. 

Somehow I'm forced to edge of the street, right to the curb. 

My head is spinning, eyes feel like they're vibrating in my skull, my teeth hurt, everything is building and rising. I look up the road and see a bus coming, no chance of it slowing. 

I step in front of it. 

The world falls silent, everything slows. The bus coming towards me in slow motion, blurred with movement, feet away, inches away, the look of realisation dawning on the driver's face as he sees me, contorting into fear and horror. 

A glance back over my shoulder at the oblivious people, heads down, intent on their journey, not noticing the person about to dissolve into peaceful oblivion. 

Stepping out. 

I close my eyes, my arms open wide, embracing the stillness about to come, a world of soothing dark, comforting silence. 

I can feel the roar of the wind, the roar of the engine comes, the world kicks into normal speed and... 

I'm back on the pavement, jostled and bustled, ears assaulted with noise as the bus speeds past me.

I do this all the time and so do so many Autistic people.  Stepping into traffic, jumping off of things, taking pills, all manner of things.  It ebbs and flows, depending on what your are doing or where you are.

These are not intrusive thoughts, as such. It's almost like they are deviations on a path, where in one world you make the choice to step out and in the other you don't, but you bear witness to both those paths at once, for just a few moments—the intensity of the situation allowing you to witness a shearing of worlds, of universes, where in one you die and in the other you carry on.

We generally don't want to die.

We want to escape.

We want to step out.

The world is an overwhelming place for us—it doesn't have to be, but the way it's set up with colours, noise and lights and people and expectations makes it so.

We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards, we Mask—all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are—to make Non-Autistic people accept us, because we don't find acceptance as ourselves.

This is why we burn out.

***

The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self's point of view:

• A growing lethargy
• An increase in irritability
• An increase in anxiety
• An increase in over-sensitivity to sensory information
• A dramatic decrease in sensitivity to sensory information
• Heightened Auditory processing disorder
• A decrease in verbal language
• A decrease in text language
• An increase in Shutdowns and heightened withdrawn state
• An increase in the frequency and severity of Meltdowns
• A diminished ability for the person to self-regulate their emotional state
• The slowing down of the thought processes
• Brain fog
• Memory loss 
• A decrease in your ability to effectively communicate what you want 
• A decrease in motivation
• An inability to generate momentum of body and of action
• An increase of rigidity, narrowing of thinking
• A feeling like your vision is tighter or narrower
• Extreme forgetfulness
• Extreme overwhelm
• A massive increase in guilt
• An increase in Executive Dysfunction
• An increase in Demand Avoidance

(If you think there are more, feel free to add them in the comments.)

Can you see why Autistic Burnout is often mistaken for Depression?

Run through that list again and apply each of those thing to, firstly, a child. 

Say, one who is ten years old or younger.

How would the symptoms of autistic burnout present? You got it: Bad behaviour, defiance, lack of compliance, willful disobedience, withdrawal, self-harm, depression. Especially, if you consider that any child—across what is a huge age range—is likely unable to be able to express or communicate any of those things effectively—if at all—or why they feel the way they do, or even how they feel the way they do, especially if they are Autistic.

If you consider a teenager, who has a mess of hormones running through them, who is acutely aware of how much they stick out like a sore thumb, whose growing self-awareness—their very sense of self—is being fractured by a combination of everything they are going through in day-to-day life and everything on that Autistic Burnout warning signs list; how does it present? Bad behaviour, defiance, lack of compliance, willful disobedience? Or if they withdraw completely, they're described as Moody, as an extreme Teen, they lock themselves away and become more withdrawn, less social, less able to function. Through it all they are still unlikely to be able to communicate any of this.

Now apply both those scenarios to an Autistic person who is undiagnosed. From the outside looking in, they are behaving 'badly,' 'acting out,' or they are depressive, or angry, so they are drugged and Therapised, or treated to such delights as PBS or ABA to 'improve' their behaviour,' or they're just left to get on with it and kill themselves, or get caught in a cycle of self-harm, or get wrapped up in short bursts of highs to make them feel better, as in drugs or criminal behaviour, as they fight against themselves and how they are feeling—or all of those things.

It sounds drastic doesn't it? 

Yet it's happening every day. 

Mostly because people do not know or understand 'why.' There are a myriad of reasons so many Autistic kids (diagnosed and undiagnosed) are in the young offenders system, and then further on, Autistic adults in the Prison system.

***

So what can we do to to ward off Autistic Burnout and what can we do to mitigate it once we're in it?

Firstly, acknowledging and accepting that Autistic Burnout is a thing, and you or your child will go through it—Social Burnout pretty frequently, and Extreme Burnout at least a few times in you or their lives.

On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where the child can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and freqency of Meltdowns that occur. Especially if you or your child Mask and do the "Coke bottle" thing of bottling up everything all day and exploding at home.

Adults and children both need to proper time to withdraw. So even at Social events or Social Situations, having an escape plan is vitally important. A reason to leave, either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.

It's really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person's brain or body considers normal parameters. 

If the person is of school age, then it will definitely depend on your relationship with the school and how frequently they need decompression days, but my philosophy is generally that my child's mental and physical health is more important than a day at school—if they need a decompression day, they take it. 

If I need to be fined by the school, then so be it, but I'd love to see someone try.

Work may be a little more difficult but, again, it depends on how good a relationship you have with your workplace. If for some reason you can't take a day, then taking as much free time to yourself as you can, with as minimal mental and sensory stimulation as possible is the best you can do. It won't be enough forever though.

Once you're in burnout, you need to learn to recognise and accept that you are in burnout. 

There isn't a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them; others go for long walks, or immerse themselves in books and films.

Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it.

The period I'm in now was triggered by me, if I'm totally honest.

Autism Awareness week in the UK was, this year (2018), incredibly busy for me and so was the week preceding it.

I established a working relationship with the North East Autism Society earlier in the year and they asked if my family could be their campaign—so, hours of filming, I blogged everyday, I made videos for the first time, spoke on various radio stations, we featured across several newspapers five or six times over the course of the week, plus I also had a trip down to London for the launch of the Westminster Autism Commission report on harmful interventions, plus had to respond to the hundreds of Tweets, Facebook Comments, messages and emails that were thrown at me.

All in all I threw myself into the whole week.

If you've gotten this far down this article, you can probably imagine by now what I felt like after all that. I have written the majority of this article in one day, for the last six weeks since Autism Awareness Week, I've written nothing, not a word.

As I said at the beginning, the irony being that I wanted this to be about burnout, yet didn't have the strength to write a thing.

***

The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop.

Even just little things like eye contact, which so many of us do, or at least pretend to do.

Allow yourself not to be sociable if you don't want to be.

Give yourself permission to duck out of situations you can't cope with instead of pretending you can.

Got something important to do? 

Cut out as much of the other crap as possible—give yourself a break, go hole up in a cupboard under a blanket for a few hours, or alternatively, if you are able, go and run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out).

A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.

The biggest thing of all you can give yourself, or your loved one, is time.

I've experienced Extreme Burnout probably four or five times in my life, lesser burnouts a significant number more, and social burnout pretty much daily. The biggest thing that has helped me avoid and mitigate burnout is learning about myself, and the way I have done that is by connecting with the Autistic Community.

I have learnt to understand the 'why' of why I react to certain things in certain ways, I've learnt to understand 'how' to best avoid certain situations or to shield myself from them with Masking.  I've been supported into learning how to Accept myself and shuck off, to a certain extent what has been thrown at me.

Autistic people have the tendency to want to pull people together because of their similarities, not push them apart because of their differences; we are accused of wanting to be solitary, of not wanting to be around people, when we have one of the strongest Communities I have ever witnessed.

The Autistic community is there waiting to be accessed by Autistic people and their families alike; a font of deep knowledge, a library of cross-referenced and correlated information about Autism, that you will not find coming from an Autism 'Expert' or 'Professional' and you will certainly not find in the DSM 5 or ICD 10/11.

Autistic Burnout is one of those things you will not learn about from Professionals, yet Autistic Burnout leads to death. How horrifying is that?

So please, play your part today and help yourself, or your Autistic loved one to recognise it and take appropriate steps to stop it.

Help save a life.

I'm coming out of my burnout period. I feel like mentally and physically the fog is lifting—I'm starting feel like gravity is slightly less effective than it has been, I'm still exhausted and have been sleeping sometimes 14 hours a night—which is bizarre for the person who has spent his whole life averaging four to five hours a night, and actually has made me more tired than refreshed I think!

I know the burnout is coming to an end because I'm writing again. It's taken me six weeks of staring at a computer screen and writing nothing. Yesterday I wrote most of this in about three hours. I'm on an upward trajectory again and it feels good. Still not quite there though, my Executive dysfunction is still playing merry hell—I've been tinkering with this essay now for five days!

Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, and offers you a level of control over the situation. Expecting that burnout will happen helps too.

If society changed to accommodate Autistic people, our lives would be a lot easier. Instead though, for the most part we are still expected to change ourselves completely or play catch up—so if there are ways where you can make your life easier, and not damage yourself in the process as with Masking, then I recommend you do them. There is rarely support for this, except from Autistic people, or if you're lucky enough to have understanding family—so self-care is your priority.

A key thing to remember here, because there are proponents of a theory that much of what is identified as Autism is actually the descriptor to a response to lifelong trauma, and I know that much of what I write here could be seen to be backing up that theory:

As a disclaimer: That theory could not be further from the truth. Trauma does play a huge part in the the Autistic upbringing and life, but that feeds into Anxiety. Autism itself is determined by Neurology. Our Neurological functions are different from birth, our brains work differently. Trauma does not play a part in shaping our basic Neurology; trauma plays a part in shaping our personalities. Autism is Autism.

Autistic Burnout is real. It exists.And it plays a huge part in taking our lives.

Repeated short term burnout is completely unsustainable and has huge long-term implications.

So please, whatever you do, take care of yourself.

Kieran.

***

Some other links about Autistic Burnout:

The wonderful Amythest Schaber: What Is Autistic Burnout?

The brilliant Ryan Boren: Autistic Burnout: The Cost of Coping and Passing

The excellent Judy Endow: Autistic Burnout

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SUICIDE RESOURCES

Anyone who is feeling suicidal may receive immediate help by logging onto Suicide.org or by calling 1-800-SUICIDE. Suicide is preventable, and if you are feeling suicidal, you must get help. So please visit Suicide.org or call 1-800-SUICIDE immediately. Please also know that you are not alone.

MHAutism, which focuses on mental health for autistic people, has developed a Safety Plan, which allows those who are vulnerable to plan for when and if they experiencing suicidal thoughts, and also to record information to help other people provide supports.

For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:

• For Autistic Teens Feeling Doomed or Broken 
• Advice to Young Autistics: Stick Around and Become Awesome

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A version of this article was previously published at www.theautisticadvocate.com. 

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