...acceptance...

 From our team:

Mental health remains stigmatized.

A “hot topic” that stirs up angst, aggression and even abuse in our modern society.

A topic riddled with controversy, regularly relegated to a point of “unimportance”. Terminology twisted by media, by politicians, by bullies…by people. Diagnoses thrown out as challenges or excuses or accusations.

Is it any wonder that we (the world over) remain in a mental health crisis?

“But what’s to be done?” you ask, as so many have done before.

How do we reduce the stigma or, better yet, remove it altogether?

~~~

We’ve spoken at length in the past few days (and years, in other platforms) about the stigmatization of mental health (particularly as regards the neurodivergent population) and all the things, large and small, that we can all do to address it head-on.

But when it comes right down to it…when the question is posed intentionally, with a true desire to take action…perhaps it’s the simplest answer that wins out.

Acceptance.

There’s advocacy: The ongoing, often risky, work of those directly impacted and their allies.

There’s amplification: The making room for~promoting~sharing~redirecting…the experiential knowledge and concerns of those directly impacted.

There’s allowance: The ‘muddy water’ of permission(s) granted to those seen as too broken or too damaged to otherwise cope.

But what remains under-utilized and under-developed is pure, simple acceptance.

Acceptance is:

1. Acknowledging and embracing diversity.

2. Listening to the needs of others.

3. Actively involving those in need instead of isolating them.

4. Allowing others to be open about their feelings and experiences.

5. Being responsible in your appropriate use of diagnostic terminology and hashtags.

6. Developing relationships with persons who differ from you.

7. Educating yourself.

Acceptance is relating to someone, even when your feelings and experiences are different.

Acceptance is how stigma is reduced to zero, and humankind at large feels safe to explore mental/emotional health.

 

Acceptance is taking people for who they are, where they are, without trying to imprint on them, or make them fall in line, or force them to chase the next level…etc… and acknowledging that we are more alike than different.

...nourish to flourish...

 From our team:

In the midst of our week-long focus on mental/emotional health in honor of World Mental Health Day, it’s time to talk about self-care.

It’s a term that’s gained immense popularity in recent years, particularly in a world where “influencers” make bank off of cleverly constructed suggestions that a particular product or service, in the guise of “self-care”, will heal something in you.

(The manipulation that launched a thousand shopping addictions and bankruptcies, no doubt!)

But true self-care, the work of healing and then properly supporting, has nothing to do with pitches and sales, and everything to do with developing confidence, becoming resilient, breaking toxic patterns and healing your inner child.  

Self-care is the work of caring for yourself as you would for a loved one.

For some, that’s going to be as simple as incorporating new habits and practices into the daily schedule: finding pockets of time to devote to self-soothing and development.

For others, self-care will seem more laborious, as they endeavor to face trauma, acknowledge toxic traits, and persist through the trials of finding new, functional systems for daily life.

Compiled below, our tips for self-care: from self-assessing to self-reckoning,

from self-soothing to self-challenging, and everything in between!

~~~

Ways to take care of mental health:

1. Take things slowly, one by one:

1. If necessary, make a list

2. Prioritize, relentlessly.  Not every action item is equally important

3. Pick away at your workload, section by section. Finishing one thing will often give you the confidence to tackle another. And, in some cases, just getting started on one thing is enough to boost your endorphins a bit.

2. Plan ahead.

1. Create a schedule of your most highly prioritized tasks and activities, so that when something unexpected and stressful comes along, it doesn’t impact you as greatly.  Remember to keep it flexible enough to do what you enjoy, but rigid enough that what’s important gets done.

2. Having a set schedule or routine provides a healthy framework for both expectations (of self and others) and boundaries. 

3. Factor recovery time into your schedule.  Our brains need time to process excess stimulation.

3. Set boundaries. It’s important to not expose yourself to things that cause you harm and anxiety, be they events, or people in your life. Trying to just take it in stride will inevitably come back to get you.

1. Tune in to what your non-negotiables are and practice saying “No” to them.

2. Assess how activities and interactions make you feel.

3. Try temporary “time outs” with scenarios and people that you find yourself struggling with.  Push pause for a day/week/month and see if you begin to feel more stable.

4. Determine if limited contact or no-contact is safer for you. Remember that you alone get to set the rules of who has access to you.

4. Focus on things you enjoy. As with planning ahead, and setting boundaries, try to find something you truly enjoy doing, especially if you haven’t done it in a while. Embrace what you find fun!

1. Think back to hobbies that brought you joy when you were younger.  Are there ways to explore/incorporate them now?

2. Push yourself to try a few new things in the pursuit of finding joy.

3. Consider participating in social learning opportunities.

4. Make time for your healthy hobbies and ask those in your life to support you in taking time to develop them further.

5. Add things you enjoy doing to your weekly planner

5. Develop your self-expression.

1. Try new forms, whether art or writing or even physical sport.  

2. Let what inside, out…in creative form, so your body can work through the physical feeling of emotion

6. Work on physical health to support your mental/emotional health.

1. Schedule and attend health appointments

2. Fuel your body with healthy food choices, and try to limit those items that create extreme highs and lows.

3. Keep active. Exercise in ways that feel safe and comfortable every day.

4. Schedule your medications and your reminders, and create a workable system for staying on top of your medication needs. If necessary, ask for help from a trusted support person. 

7. Place limits on “high calorie, no nutritional content” entertainments so you don’t wind up “too busy” to fulfill your obligations or enjoy meaningful activities and relationships.

1. Limit screen-time when necessary and possible. 

2. Limit social-media scrolling

3. Consider turning off comments or hiding “likes” if you find yourself obsessing over how your own content is received.

4. Remember that screen content (games, shows, social media) are carefully selected/filtered/scripted moments and not an accurate reflection of real life.

5. Don’t compare yourself or your life to the snippets you see on screen.

8. Develop a healthy relationship with yourself

1. Speak kindly to yourself and silence the unnecessary critic

2. Hold yourself accountable for those action items you’ve prioritized

3. Avoid comparisons to others

4. Share your accomplishments and successes with trusted friends and family

5. Foster your resilience with regular reminders of those things you’ve already overcome. 

9. Consider talk therapy

1. The ability to be able to reflect on your experiences and emotions is important.

2. Therapists can see the big picture reflected by your (natural) focus on the small details that are troubling you, and help direct you through them.

3. Therapists can help you develop new, successful ways to adapt and cope.

4. The therapeutic process helps to develop and/or heal your inner voice, as you practice assessment/acknowledgment and self-directed challenge

5. Understand that not all therapists are created equal and be ready/willing/able to keep trying until you find one with whom you are comfortable

6. Therapy puts you back in the driver’s seat of your own life, as your therapist helps guide you through your feelings and reactions and provides you with tools to recenter.

7. If you’re feeling too high-strung, and on the cusp of a crisis, it’s especially beneficial, serving as something of a redirection.
   
   

~~~
For those of you who struggle with guilt regarding self-care, answer this question: What greater gift can you give to those you love than your own wholeness?” – Shannon Tanner

...what creates stigma...

 From our team:

Stigma.

Small word. Big impact. 

Defined as “a mark of disgrace associated with a particular circumstance, quality, or person”, stigma has been applied to mental/emotional health with such frequency and carelessness, that we are all at risk of undue suffering…whether by individual lack of treatment and accommodation for self, or reactive difficulties brought on by the struggles of those we care about in our lives.

Clearly, the stigma relating to mental/emotional health is a problem for all.

But why, in 2022, are we still stigmatizing mental/emotional health, both the diagnoses and the care?

Easy answer?

It’s insidious.

~~~

First off, and perhaps most problematic, is the false correlation of mental illness and mental health that’s grown to be so prevalent in social discourse today. Mental Illness is a blanket term, albeit outdated, in reference to psychological conditions that are typically a deficit with little to no resolution. It used to cover a lot more in relation to diagnoses, but it carries a deeper weight and connotation, very often with a persistent degree of dehumanization. Mental Health is in reference to one’s psychological and emotional state, often correlating with short-term diagnoses such as depression, anxiety, and preemptive posttraumatic symptoms.

A lack of care towards the former generally leads to the latter suffering, but it’s not the sole cause. Regardless, many tend to steer away from the term because of the context of previous “psychiatric treatment” and the inflammatory connotation in today’s social environment.

Contributing to that false correlation is something perhaps a little more annoying at an individual level…medical practitioners aren’t always on the same page, so to speak. The DSM, or Diagnostic & Statistical Manual of Mental Disorders, is a broad, heavily referenced resource. However, previous versions of the DSM were reductive at best, essentially making “large sweeping hand gestures,” as understanding within consensus remained poor. 

The unfortunate part?

People still frequently refer to DSM IV, and DSM V, whereas the current, and most thorough version thus far, is the DSM V-TR. In other words, it’s the equivalent of a neuroscientist referencing phrenology. As such, preemptive associations were reached that, when mixed with poor phrasing, led to correlations that filtered down to the practice itself. Likewise, previous generations would teach things to the next generations the way they understood those concepts, resulting in a degree of persistence as well.

Perhaps the most disturbing factor in all of this, though, would also be an element of the stigma itself. Ignorance, Hate, Greed…the purest of motivations, not on account of whatever aspects, but simply on account of how frustratingly predictable they are. As is often the case, people hate adapting, and that extends to knowledge. At some point in time, many of us got it in our heads that science is prescriptive rather than descriptive, and turned away from the idea of revisions, of corrections, of expanded knowledge, and invariably, others suffer because of it. Terminology gets used as a descriptor when it shouldn’t be, all because of this. In turn, perhaps due to ignorance, or perhaps due to utter hatred towards those who are different, those in positions of authority maintain a steady distaste, and that trickles down as well. Regardless of who someone is or whatever their circumstances may be, the speech pattern, the lingo of authority, of power, will spread to others. Buzzwords quickly become a way to circumvent any actual thought process, almost cueing an instinctive reaction, as those more fortunate, those not impacted, were trained to do by this language. Horrific events and tragedies almost immediately are branded “a troubled individual’s mental health crisis” or worse still, the implication of a link to some diagnosis or another.

A good thing to keep in mind, although I’m afraid the source who inspired me seems to have slipped mine, is that when you let an individual set the language, the simplifications of concepts, on their own terms, you’ve already lost the debate.

Another element at play, that seems to build upon those motivations, is altogether too easy to describe. When one is ignorant of the impact of someone’s needs, it becomes far too convenient to place the blame squarely on their shoulders in a relationship. It becomes a toxic cesspool of proxy-victimhood and gaslighting that emphasizes that because you know someone who’s struggling, it’s clearly your own interactions with them that are a ‘severe struggle.’ I’ve seen this in dozens of smaller communities, where individuals tend to form an echo chamber, where because someone they know received a diagnosis, they themselves are in need of the most help.

As I’ve addressed both in talks to one of my former school’s BOE, and in a TEDTalk I had given earlier this year, there is one aspect in all of this that frustrates me to no end. I tend to fixate on language to a large degree, so when something is used in an incredibly inaccurate manner, I feel an urge to correct. When diagnostic terminology is used this poorly, though, it’s something else entirely…

Throughout my time in various communities, I’ve seen references meant to hurt, to joke, or simply just to convey a meaning, but regardless, these references are damaging.

Autism has been used to describe stupidity and stubbornness, Depression understated as a bout of sadness and frustration. OCD to some, simply means pet peeves, and ADHD, a minor burst of energy. BPD amounts to an excuse for poor behavior, Aspergers, the now outdated term for a subset of Autistics, being used as a vague Far Right joke. To top it all off, references to suicidality and its trend within certain demographics is used to hurt others, to end an argument. This, in particular, can be especially evident towards neurodivergent and queer folks. 

To take things a step further, a diagnosis can effectively be “over-acknowledged,” in the sense that a comparison is immediate. With those unaffected, the implication is weakness, deficiency. With those facing different struggles, it can be a suggestion of exaggeration, as if one experience is somehow lesser, and by extension, the individual is of poor character. It’s always about individuality and compassion until they face the opportunity for it firsthand. 

As I also brought up in my TEDTalk, there’s even an insinuation that anything can be risen past, or overcome. It seems to conflate the short- and long-term diagnoses far too frequently, as some have even suggested that prayer can heal and cure.

Frankly, as a species, we’d all benefit from a lot more medical knowledge. 

Building upon a prior point, I want to highlight the fact that terms and treatments have been effectively weaponized in political arenas. Anything that can stir outrage is viewed as fair game, as they play off rudimentary understanding. I will say it louder for those in the back…POLITICS HAVE NO PLACE IN MEDICINE AND HEALTHCARE.

Contributing to that outrage is a particularly disturbing spotlight. No system is without flaws, but emphasizing those flaws is not always a good thing. Misdiagnosis and malpractice are rife within medicine, and yes, it does need addressing. However, to sweep aside the experiences of those who’ve benefited, to attempt to undo that, in favor of a smaller subset instead, one that’s resentful of that failure they went through, does a greater disservice. More often than not, these failures are cast as deliberate, as if they’re part of some grand conspiracy, that usually ties into a degree of antisemitism as well. Perhaps ironically, it’s the same actions taken by these individuals’ predecessors that led to what fuels those theories. Community infighting will often result, as not everyone has the same viewpoint, the same perspective, so when someone’s scorned enough, they’ll align themselves with the opposition just to get back at another. 

Additionally, that infighting is a frequent target for others to take advantage of, as “sock-puppets” crop up, artificially inflating the number of “concerned individuals.” Any overwhelming evidence to the contrary simply gets dismissed as it doesn’t fit the narrative.

To top it all off, diagnosticians are not infallible. Some individuals may try to game the system, and as such, they can trick the practitioner into a misdiagnosis scoring themselves medications they can use recreationally. Drug abuse is a problem, but unlike the general concept that some see, it’s far more multi-faceted.

To tie this all together, and cycling back to the ignorance on part of many, there is a large unreceptiveness to new information. Whatever excuse, be it that something is “fake science” or “government-bought,” they find a way, no matter how many sources you cite, or how much data you incorporate. Perhaps ironically, this conspiratorial suspicion has very little basis, as higher-ups within standard hierarchies tend to lack that competency.

These same individuals, these “armchair experts,” may wear many faces. They could be barely-qualified individuals whose field is the exact opposite of the subject, or perhaps they’re an anonymous individual on social media. Regardless, credentials are always important, and peer-reviewing is essential.

Don’t fall down the rabbit hole, and don’t let yourself be consumed trying to refute these arguments. Sometimes, it’s better to just let them talk into the empty air, than to trot them out for refuting, granting them an audience in the process.

...welcome to the conversation, we're so glad you're here...

 From our team:

What better day than World Mental Health Day to try to spark some positive change?

You with us? 

Here's the thing. It's 2022. We've literally just survived a devastating pandemic that continues to impact almost every aspect of our daily lives. 

We.

All of us.

Every single person. Young. Old. Male. Female. Nonbinary. Healthy. Sick. Persons of every race, religion, background and situation.

We.

All human. All impacted. All changed.

All…coping.

Covid-19 came crashing into our lives in 2020 and suddenly the entire landscape changed. Empty schools and empty offices. Grocery stores with one way arrows, and nightly curfews.

Danger. All round. Invisible danger in the very air. 

We were told to stay home. Cautioned to sanitize everything. Suddenly, the world we had lived in was the most dangerous place on earth. And the very lifelines we all had to our own peace of mind (whether friends, or coworkers, or gym routines, or book clubs, etc..) were forcibly abandoned. 

We hunkered down, many in uncomfortably close quarters, others in utter isolation. Victims found themselves locked in with their abusers. Those reliant on childcare struggled to adjust to being primary caregivers. Children woke to find the doors to the outside world firmly locked, and their windows into learning (both in terms of education and socially-emotionally) shuttered. 

We sheltered-in-place. We masked up. We worked from home or didn’t, as the job and housing crises expanded exponentially. We suffered heartbreak and loss and dealt with the desperation of our impotence. For better or worse, mostly the latter, people found themselves cut off, and no matter how one regarded that socialization, we all longed for it, a part of life seemingly lost for good.

And then we Zoomed. (Never doing that again. Blech.)

The outside world came in, with fancy filters and backgrounds to hide or enhance. We stared into preview screens, fixing our hair and finding the right angle. We tested our sound quality and made countless adjustments. We became characters on screen, highlighting our self-perceived good angles and intonations, and hiding all the rest. It was “The Truman Show”, en masse. And as two-week stay-at-home orders extended into a month, then two and so-on, those on the other side of our screens began to seem like nothing more than supporting characters. Gone was the sense of connection. 

In every sense of the word, it was just mimicry of life, a pale imitation of what we’d previously chosen or fallen into. Zoom and its ilk soon lost their appeal. Signals faltered. Lawyers showed up as kittens on screen. Hackers hijacked. People tuned in without turning their cameras or audio on. The pressure to be perfect on camera was too much to bear, too much to bother with. 

As interaction fell by the wayside, we sought ways to fill that void. Some of us dove intensely into self-care, others took up new hobbies. New exercise routines and banana bread replaced the grind of office work, heatless curls and DIY supplanting ‘me time’ services. 

And yet, despite all of us finding ourselves in the same circumstances, hate flourished, a weed overtaking everything. Somehow, some way, things became worse. A shared experience, an almost necessary empathy and sympathy..broke us apart. Left to our own devices, we all developed ‘main character energy’. Our individual experience and the opinions we held - suddenly the only ones of importance. That overwhelming feeling of danger replaced by a sense that we alone held the key to both surviving and thriving. A need to be seen, to be heard…and the weakest among us suddenly became the loudest. 

‘Survival of the Fittest’ was the unspoken echo in a world devoid of social connection, and with no rules in place to steer the competition, contenders threw the worst of themselves into the ring. While plenty worked tirelessly to create avenues of assistance and support, so many others were determined to dismantle the systems of pre-pandemic life and remake the world in their own image…however grim that might be.

We continued to cope.

Masked and screened and removed…we went through the motions of life. Or at least, we tried. But realistically, remote-access meant no access to many in need. Counseling and support services on-hold and doctors’ appointments permanently postponed. Caregivers no longer permitted access. Social services shut down. Medications delayed in-transit. Every aspect of health-care was impacted, and mental-health services took the brunt of it.

It’s 2022 now. The pandemic continues, but we’ve accepted its presence. It’s just a part of life now. Masked/unmasked, we crept back out into the world and began the hard work of rebuilding. Some of us refined by the experience, others of us broken down to just our crudest parts. All of us still coping.

More to the point…all of us made aware of our own shaky grasp on mental and emotional health. All of us having learned how dependent we are on our own individual safety nets.  And so many of us burdened with new fears, new hesitations, new reasons to put off or avoid seeking help. 

Which begs the question: Why, then, are the “proven to be commonplace” struggles with mental and emotional health still stigmatized? Why has the vast majority not found at least some semblance of compassion?

Over the course of the next week, we’ll be diving into the root causes, the ongoing socio-political dynamics, the idea of individual responsibility toward collective reform, as well as our suggestions for changes we all can make, both within ourselves and in our interpersonal relationships.  Please join us, by reading here and furthering the conversation in the comments section across all our platforms.

~~~

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” ~Mother Teresa

World Mental Health Day 2022: A conversation regarding Autistic Burnout

 TERMINUS INDUSTRIES X CONFESSIONS OF THE CAFFEINATED:

Today is World Mental Health Day, and you know we couldn’t pass up the opportunity to continue the conversation . . . So, let’s just Get Real and Dive In:

~ ~ ~

 

Johannes:     Greetings, all. Switching the focus today, and rightly so, from Transformers (as awesome as they are), to transformation (ongoing)...in my own weird, convoluted sort of way!

Leanna:     Yes! So glad we’re doing this! I think I can safely say that every time we’ve collaborated on pieces like this, we both benefit. Opening the conversation, and keeping it open, around mental health (and emotional health) is so important. We are reminded of “where we’ve been”, “what we’ve already overcome”, and how different and similar we are. And, equally important, sharing conversations like these allows for others to connect and open up as well. 

J:         Exactly. I absolutely wish I’d had access to things like this when I was younger and struggling to make sense of what I was experiencing. Even now, being on the creator side of things, I still look for others’ experiences to help guide mine.

L:         There’s something very healing about being able to take our experiential learning, and share it in a way that others can benefit from. It gives meaning to the struggle in a way, I think. And it can really bring home the lessons we’ve learned. That idea of “teaching” someone else, and being taught by how they receive it. 

J:         Yeah. Especially when it comes to mental and emotional health. Those aren’t topics that you can just read up on and magically be healed or made whole or...whatever...they’re more organic and layered. Shades of gray and all that. There are creators out there who make absolutely relatable content, but I want to be able to give my own take on things, my own experiences. With that in mind, I think the real learning happens when you connect to someone else’s similar experience or similar reaction to stimuli...and realize you aren’t alone – realize what you went through wasn’t some one-off thing...

L:         And on that note, what’s the topic for today?

J:         I thought we could talk about Autistic Burnout. Both in the more medical sense, and in the general experience a lot of us have.

L:         Got it. This one’s definitely in your wheelhouse, buddy! 

J:         Yeah, I’m definitely familiar with the feeling.

L:         Feeling is a great word choice here. Autistic Burnout, in my limited understanding of the experience, is both the overwhelm of too much feeling and the vacuum of enforced lack of feeling. A complete split from the sensory world that we live and move in. 

J:         To put it plainly, too much sensitivity leads to insensitivity. So, yeah. Too much feeling leads to no ability to feel. Back during my senior year of high school, I was overwhelmed to that point. Looking back, I’m still amazed at the fact that I managed to keep my grades up.

L:         I’m so proud of you, as you know. But, I think it’s only fair to point out here that your high school experience, while recent and therefore familiar to you, is really only the tip of the iceberg here. You’ve sort of balanced on the precipice of burnout in recent years, but definitely fell all the way countless times in your younger years. Which, in hindsight, makes a lot of sense given how many demands you were placing on yourself.

J:         I guess I’m a bit hesitant when sharing, but a lot of that comes from having to emotionally cordon myself off, thanks to frequent bullying in earlier years. 

L:         I get it. I do. And maybe that’s part of why I’m here to help steer the conversation...control that ebb and flow. Someone, somewhere, may just read this and need it. Someone, somewhere, may be where you were then...or parenting a child who is experiencing the same. Bullying is never ok. I don’t want to ever suggest that your having been bullied, as relentlessly and ruthlessly as you were, was supposed to happen or a ‘learning experience’. It wasn’t. It was disgusting and vicious and vile, and completely not ok. Not OK! But it happened. And you made it through. And you developed coping strategies that can help others. It’s a testament to who you are as a person, that you can take the worst of others and create something to help someone.

J:         Part of my hope for the future in regards to that, is that nobody should have to go through it. It’s not just “kids being kids.” That harassment, that cruelty, it just ruins those it touches. There’s no possible excuse.

L:         Agreed. And we could go down the rabbit hole here for days, discussing this. But let’s try to stay on track. The bullying contributed to your overwhelm, for sure. But it also prevented you from seeking assistance when you needed it.

J:         It definitely did. I learned quickly to mask my discomfort and my pain,and did my best not to draw attention. While I desperately wanted the adults in my life to see that I needed help, I didn’t dare ask for it or expose myself. Listen, the reality is, elementary and middle school kids are just rabid animals, looking for weakness to exploit. 

L:         Ha! They really are! Or, at least, many of them are. I wish I’d been better equipped at the time to really push you past that and toward better self-advocacy. 

J:         I mean, c’mon. You can own the mom-guilt if you want to, but I’m not putting it on you! A 6 year old, a 10 year old, even a 12 year old shouldn’t have to advocate for themself, if the school staff is doing the job right. The people reading this probably can’t see how much I’m shaking my head with disappointment in those staff members and administrators right now. Let’s just all be really glad that I had a few really great teachers during my public school days. 

L:         Well, then. I’ll try not to borrow trouble! Ha! And yes, you had a handful of really wonderful, insightful and impassioned teachers. Thank goodness for them! 

J:         So, yeah. Bullying sucks. But bullying alone wasn’t the cause of my burnouts. Autistic Burnout really is far more complex than just “I can’t handle this one thing.” Autistic Burnout is effectively when one’s plate is ‘too full,’ but with a particular emphasis on sensory overload on the daily. It’s a lack of responsiveness, a lack of interaction, irritability...just this total wreck that you see coming, but by the time you take full notice of it, it’s already upon you. And unless you truly give yourself time to recover, it can go on for a ridiculously long time, and get exponentially worse.

L:         And for those of us on the other side...the parents and caregivers and friends/acquaintances/romantic partners/co-workers...etc... What we see can be very different from what you are experiencing. We can see it manifest as a meltdown (sort of a tantrum, but unconstrained by the limits that tantrums have), or complete communication breakdown, or even as a physical shutdown. With you, I’ve seen all that and more. Fetal position, rocking back and forth. Repeatedly punching yourself or banging your head into the wall with seemingly no pain. Burying yourself under the heaviest blanket you can find for hours at time until your system literally burned through it and you came back out, sweating and pale and shaky. Or, more recently, communication breakdown to where you neither hear nor respond. 

J:         And it’s not something that can be magically solved with some statement like “It’s okay, you’ll get through it” or “It’s just one of those moments, it’ll pass.” That definitely ups the irritability.

L:         Understood. I know it took me time (and several mom-fails) to accept that I needed to allow you to “go through it” rather than interfere. I just wanted to be able to fix the problem, you know? 

J:         Well, and that sort of brings home my point. The burnout isn’t the problem. It doesn’t need to be fixed. If anything, it is the solution to the problem of total overwhelm. It’s a functional dysfunction that the autistic brain protects itself with. It’s basically a very messy looking reset button that fries the whole system, wipes out all the data, and reboots. 

L:         Oh! That’s a great way to put it. That...makes sense, actually. I think from the outside looking in, Autistic Burnout looks...well, broken. When in fact, it’s probably more of a power-saving measure . . . that inherent instinct to turn off receptors and connections in order to divert energy to one manageable task at a time.

J:         Absolutely, though there are times where you don’t even want to do that one task...just instead curl up into a ball... It can be hard at times but pretending like nothing went wrong is even harder.

L:         But is it a want? That curling up and closing off and...well, sometimes, falling off the cliff of function in every area? Or is it more in line with a breakdown that just happens?

J:         The latter. There are points where you just can’t contribute anymore. Where your ability to react to anything just disappears. It’s both total overwhelm and complete void.

L:         Can you share with us a bit about how it has changed for you over the years? I could talk about what I’ve seen, but that’s not really a fair or total depiction.

J:         So, just to be clear, most of my early years are a fog, so I can’t really speak to how I felt in those moments.

L:         Totally fair. Ok, so from the observer’s point of view, what I saw was both mental and physical system failure. It wasn’t so much unresponsiveness and full-on fight-or-flight, usually fight. Your whole body would become tense and locked. You’d usually get sick to your stomach and develop a fever. Attempts to console you (which I mistakenly thought you needed) were met with physical resistance: biting, punching, squeezing parts of me hard enough to bruise, etc... And it usually took a few days for you to recalibrate. 

J:         I do vaguely recall some of that but picking out the context is hard. I do remember feeling that way, though. Sorry, mami. 

L:         Right. So, let me just go off on a quick tangent here and reiterate that this is not something to feel guilty about. You were, and I quickly came to understand, communicating in the only way you could at the time. You needed to get the message across that you were in such complete distress, and the best way to do that was to cause me physical pain until I was exhibiting similar distress. I liken it to that image we have of The Doctor’s regeneration...so much pressure that the body is just splayed, fire shooting out of every limb. Burnout was...literal burning...energy displacement... 

J:         It can be. Honestly, that’s a good analogy for how it sort of feels.

L:         Uncontainable. 

J:         Yeah. Even though it presents differently, now, that sort of sums it up. So much stimuli having been collected that the container is bursting. The container being the whole of me ...mind AND body. It’s this psychological explosion, very often with physical...shrapnel.

L:         So circling back...can you remember more clearly how it manifested, say, in your middle school years?

J:            I was an absolute mess. Self-care went out the window, communication nonexistent, just this total collapse. For instance, I’d go to take a shower, and it’d be this relief...but at the same time? I got so lost in that, almost...sensory deprivation, that when you banged on the door an hour later to yell at me to stop wasting water, I’d come out not having actually showered. I’d get in there and no longer have any concept of what I was supposed to be doing...or how to do it...or even any sense of urgency that something was supposed to be done. 

L:         Oh. Ugh! Yes! Brief moment of silence for all the hot water wasted.

J:         It wasn’t intentional. It was basically a white-noise machine of warmth in which my consciousness just ceased existence until I finally heard you knocking.

L:        So, safe to say you were in sort of a hibernation mode?

J:         Pretty much, yeah.

L:         Well, but hibernation is associated with rest when we think of animals that hibernate over the winter. Is this in any way restful? It doesn’t seem like it is when I’m watching it unfold. 

J:         Fair point. Semantics, I suppose. It’s not restful, but it is a resting state. Brain in sleep mode.

L:         Got it. So, physically, any sense of what’s going on around you? I know that sensory overwhelm is a regular trigger for Autistic Burnout. But when you are “in” it, are you aware of increased or decreased sensitivity? Or are you in a void where nothing reaches you?

J:         Kind of both, depending on the severity. I can definitely tell that my responsiveness to things has dulled quite a bit, but beyond that...

L:         I’d actually like to dig a bit deeper here. For example, when you’ve been experiencing burnout and are non-responsive...are you still hearing me? Is there a stop-gap on the way to responding? Or are you truly unaware?

J:         Sometimes there’s a bit of a delay, almost. Like, I actively have to force myself to respond, interact. I still hear it, but I think the best way to describe it is like it’s almost echoing in, just hollow. Difficult to process.

L:         Ah, process. Great word choice, there! Processing is an area that you have such trouble with, isn’t it? I imagine that your overwhelm is most often brought on by your almost hyper-vigilance and an inability to process the vast amount of stimuli and data you receive.

J:         Yeah, and that’s another thing worth mentioning. If I’m seeming out of it or unreactive, it’s usually because I’m already processing a bunch of other things, the sort of input that a lot of people are able to tune out, but I’m not.

L:         I get that. No, really, I get that. Which you already know, because we’ve conversed frequently about my own suspected neuro-divergence and hyper-vigilance and sensory-sensitivities...etc.. Ha! But back to you. Do you feel a mood shift during those times? 

J:         I guess it’s almost like a bout of depression mixed with, well, classic anxiety. It’s hard to describe, but just this sort of souring that tends to spoil a lot of the things I’d normally be interested in.

L:         Right, so I think we’re jumping ahead to present with that last comment. You’ve talked about this with me before. And I think you’ve brought it up in therapy as well. That sense of ambivalent remove from those things and experiences that, deep down, you know you actually would enjoy or find fulfilling, but seem gray and lifeless. Do you think that’s true Autistic Burnout, or is that depression? 

J:         Well, that kind of shifts into another subject. Medically, Autistic Burnout’s characterized by that irritability and unresponsiveness. The bouts of depression in turn sort of result from that but are fairly common. Thus far, I don’t think anyone’s been able to pinpoint why exactly they happen.

L:         Ok. Definitely something to continue digging into. But for right now, can we jump back to how you experience Autistic Burnout now, as a young adult. As in, what are you feeling physically before, during and after?

J:         Well leading up to it, it’s that increase in anxiety and tension, which kind of mixes rather viciously with the stimuli in a less than pleasant cycle, until I kind of just ...bottom out. That sort of tension, that feeling of isolation when you’re nervous, kind of just lingers as a shell, and it just...I guess it sort of gets hard to move around in that shell, if you understand what I’m getting at.

L:         Do you feel more tired before/during/after, or just more...sensitive physically/mentally/emotionally?

J:         I feel sort of physically and mentally tired in the ‘immediate’ after the fact, but that exhaustion mostly occurs during the burnout. And as for emotionally...I feel much weaker. I think that also partly contributed to my resolution at the start of the year – to stop taking every negative thing thrown at me. I tend to, as I said before, emotionally partition myself, so that definitely contributes to the overwhelm, too.

L:         What do you wish the neurotypical community understood about Autistic Burnout? Or, maybe, expanding beyond that, what do you wish the people you interact with understood about it? So, family/friends/acquaintances/etc...

J:         It’s not something to just push past or out of. We need time to recover, to pull ourselves back together in a way. We don’t process the world in a way where we can just willingly tune things out if they’re too much.

L:         So is it safe to say the accommodations you’d ask for would be: time, safe space, and...judgement-free “moving on”...sort of...no questions asked, let’s just get back to regularly scheduled programming now that you’re back with us? Or do you want to be asked about what caused it, what could be done to prevent it, and what you might need moving forward?

J:         Err...both, but neither? Definitely yes to time and safe space. And, in a purely self-conscious way, yes to “let’s just all move on”. But, it would be great to find ways to reduce burnout frequency and sort of shift some of those triggers out of the way. So in that sense, yeah, I want assistance. Also, I know there are times where I just want to move forward, no questions asked, and I know there are others who’ve felt the same way. Kind of just an instinctive avoidance.

L:         Question for you...are you embarrassed or ashamed of these burnout experiences? 

J:         Honestly, yeah, a bit. I can’t pinpoint exactly why, but I’d say just that feeling of...vulnerability, I guess? 

L:         Understood. Completely. No one...NO ONE...likes to feel vulnerable. I imagine that in some of your ‘episodes’ it’s probably felt frightening that you can’t stop what is happening or push pause until you are safe at home. I’m so glad we’ve always been able to have these open conversations (even non-verbally when you were young!) because it allows for a constant growing and evolving: of expectations, of safeguards, of strategies for coping...

J:         Yeah. If I can emphasize one point, it’s that autistics NEED to have another person in their corner to help them navigate the world of neurotypical expectations. There’s definitely a difficulty over how much one might want to share, though.

L:         So what about your peers...your true peers...other similarly-gifted, similarly-abled young autistic persons? What advice might you have for them in terms of coping with Autistic Burnout? Any strategies that you have found helpful in either staving it off or recovering more quickly? 

J:         First and foremost, focus on the immediate, not the long-term. Yes, there are things you can worry about but your personal wellbeing is a thousand times more important. Sign off social media and put your phone on ‘do not disturb’. PLEASE. If you have to outright say to your friends and acquaintances you’re going on a bit of a hiatus ...do it! If they don’t like it, then they’re not truly your friends. I’m lucky to have acquaintances who I’ve remained in touch with, who allow me the opportunity to take up where I left off. Additionally, try and always have things at your disposal that are comforting. For example, I have a weighted blanket to curl up under when it gets to be too much. Things like earplugs or headphones, soothing scents (lavender for me) and items with soft, smooth textures can help. Basically, anything that helps you create a sensory deprivation chamber of sorts, where the environment is entirely controllable by you. 

L:         Those are some good suggestions! What about in terms of those around you? Autistic Burnout doesn’t happen in a vacuum, nor does it respect the demands of work, social life, school, etc ... Any advice on how to ‘deal’ when you can’t just close the door behind you?

J:         You know, I think about that a lot. I think most autistics probably do. While I wouldn’t call it a fear, it’s definitely something my mind keeps trying to solve. Remember before, when we were talking about how vulnerable it makes me? So, yeah, trying to find ways to create a safety net is definitely important. One suggestion I’ve come across is to carry a card that describes what sensory overwhelm is: sort of a “here’s what’s triggering me, please help me lessen it”, so that one doesn’t have to add to the plate with verbal communication. 

L:         That’s a good idea. And obviously, when it comes to school and workplaces, you really do need to be willing to advocate for yourself and ask for accommodations that take burnout into consideration. Just brainstorming here, but: an empty room with additional sound-proofing, a chair or couch, headphones, overhead lights turned off, music turned off...that sort of thing... 

J:         Right. Obviously it’s going to be so subjective, because every autistic is an individual and experiences individual, and therefore unique, sensory sensitivities. What triggers me and what helps me, may be the opposite of someone else. Additionally, these things can change over time. There was a point where I was more sensory-seeking.

L:         Oh, I remember! Just to jump in quick with ‘what worked then’ and totally doesn’t now. You used to need a lot of deep pressure. We called them steamroller hugs. Did that ground you somehow, or did it cancel out everything else? 

J:         In a way, kind of. Nowadays, though, they don’t tune it out as much. I can’t help but focus in on every little bit of incoming data. 

L:         I think it’s probably time to wrap things up here.

J:         Probably!

L:         So any last tips to share, for either the neurotypical community in terms of better understanding or ways to assist, or for the neurodivergent community that may be looking for new ideas to try?

J:         Well for neurotypicals, be patient with us! I tend to treat things in an almost scientific manner, so don’t immediately make an assumption unless you know the person well. Misreading the circumstances can be just as bad as ignoring them altogether. Likewise, for neurodivergent folks, find outlets for yourself . . . locations or routines just to let yourself recover. You don’t need to constantly expose yourself to the world. I realize there may be a little bias in that, perhaps due to my own attitude towards social interaction, but if something severely bothers you, avoid it!

L:         So much THIS! Your world can be as large or as small as you need it to be. There’s so much expectation placed on us all to be social creatures, defining our lives by how large and layered our relationship circles are. But those very relationships introduce so much mental and emotional labor into our lives. It’s important to recognize that you may not be managing that well and be willing to minimize when necessary.

J:         Oh yeah. It’s quality over quantity. 

L:         Sure is! And in terms of quantity, we’ve reached our word limit and then some! Thanks so much for this conversation.

J:         Glad to, and honestly this gave me a chance to evaluate my own takes on things like this! Thanks for chatting...and to those of you reading, thanks for sticking with us. Stay tuned for more collaborative pieces regarding mental and emotional health, and neurodivergence!