Hey there! I’m an Alaskan-born writer in Long Beach, CA who’s driven by curiosity and prone to diving into topics for years, then plunging into a new one (#AuDHD) but most of ’em file under wellness, neurodiversity, personal development, and societal change.
My writing’s been in The Huffington Post, MindBodyGreen, Tiny Buddha, Leafly, She Knows, Ravishly, and more. I also make other stuff, like art. I’m also a lover of thoughtful conversation, well-written TV, being near water, really great trees, and watching my dog, Foxy Queen, happily freak out when I tell her it’s time to eat.
If you visited a zoo, and a gorilla started talking to you, what do you think they’d say about humanity? Think they’d be cool with the modern state of affairs?
According to Daniel Quinn, author of 1992’s award-winning Ishmael: An Adventure of the Mind and Spirit — the answers are a whole lot, and hell no.
Ishmael features a man being taught about the world by a gorilla, one who divides humanity into two types: the Leavers and the Takers.
The first philosophy puts humans within the web of nature, working consciously to only take what they need; and the other puts humans as the world’s ruler, free to take whatever we can.
If the events of 2020 have left you questioning the way our society does things, or are interested in living a more conscious life — this should be your next read.
Here are a dozen (very hard-to-narrow-down) quotes from the book:
“The premise of the Taker story is ‘the world belongs to man’. … The premise of the Leaver story is ‘man belongs to the world’.”
“And every time the Takers stamp out a Leaver culture, a wisdom ultimately tested since the birth of mankind disappears from the world beyond recall.”
“I have amazing news for you. Man is not alone on this planet. He is part of a community, upon which he depends absolutely.”
“The obvious can sometimes be illuminating when perceived in an unhabitual way.”
“You’re captives of a civilizational system that more or less compels you to go on destroying the world in order to live… I think there are many among you who would be glad to release the world from captivity… This is what prevents them: They’re unable to find the bars of the cage.”
“The world of the Takers is one vast prison, and except for a handful of Leavers scattered across the world, the entire human race is now inside that prison.”
“Donald Trump can do a lot of things I can’t, but he can no more get out of the prison than I can.”
“They put their shoulders to the wheel during the day, stupefy themselves with drugs or television at night, and try not to think too searchingly about the world they’re leaving their children to cope with.”
“Diversity is a survival factor for the community itself. A community of a hundred million species can survive almost anything short of a global catastrophe.”
“We’re not destroying the world because we’re clumsy. We’re destroying the world because we are, in a very literal and deliberate way, at war with it.”
“The mythology of your culture hums in your ears so constantly that no one pays the slightest bit of attention to it.”
“I think what you’re groping for is that people need more than to feel scolded, more than to be made to feel stupid and guilty. They need more than a vision of doom. They need a vision of the world and of themselves that inspires them.”
Can you envision a version of yourself you find inspiring?
Please join the #StopTheShock movement to help end the abuse.
Since being diagnosed as autistic in 2020, I’ve had to do a lot of confronting my own naivete, which has been a soul-crushing aspect of the experience. Part of my rose-colored glasses being forced off was learning that autistic people are being tortured with shock devices, legally, in the US, where I live.
To be more specific, it’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts; where most of the students are of racial minorities as well as being from out-of-state, often brought in from New York City.
And when I describe the use of shock devices as torture, I’m not being hyperbolic — in 2013, the UN’s Special Rapporteur on Torture put out a report describing it as such, also explicitly calling on all States to ban this kind of “treatment.”
And yet, the human beings — including children — at Judge Rotenberg still have to wear graduated electronic decelerator (GED) devices that can deliver a painful shock via remote control at any time, devices that the FDA found to be capable of physical and psychological harm, including pain, burns, tissue damage, depression, fear, and aggression.
One might assume that such barbaric punishment only happens in extreme cases, but according to Time magazine that’s not the case, additionally, they’re the only ones in the world still doing it:
The facility — the only one in the world still using such tactics — has long been targeted by advocates for the disabled because of its use of electric shocks. The “treatment” is delivered by a device on the skin whenever patients break rules, even for violations as mild as talking or moving restlessly during class.
“Moving restlessly,” refers to stimming, often-involuntary movements and tics (sometimes verbal) that help us autistic people in regulating our energy — our bodies do it to better function, we need it.
And, disturbingly, there are also several other untenable rules. According to the Autistic Self Advocacy Network (ASAN), other reasons for shock include: flapping their hands, standing up without permission, swearing, not taking off coat, involuntary noises or movements made because of disability, and screaming in pain while being shocked. (Yes, you read that correctly.)
Tweet ‘FDA: Stop Autistic Torture, Ban GED Shock Devices #StopTheShock’ w/your thoughts to @FDADeviceInfo and @US_FDA every Tuesday.
Can you imagine knowing that any second a trigger, such as a random sound, could cause your autistic body to automatically react in a way that earns you a painful electric shock, which could be repeated if you dare cry out in distress?
It’s infuriating and heartbreaking that this is still happening.
Despite consistent protest against JRC and their tactics, their involvement with lobbyists enables them to legally continue this torture. This fight has been going on for literal decades, so long story short — the FDA had banned it, but last summer it was overturned by a DC Circuit Court, who refused to reconsider that court ruling in December.
Like the rest of the community, ASAN is outraged and calling on the FDA to “do whatever it takes to reinstate a ban by immediately reintroducing a new rule that would address the court’s concerns while effectively banning these devices.”
What You Can Do
In the coming months, the team at ASAN will be having talks with the FDA that will potentially lead to a grassroots action plan from them; but in the meantime, we can get the word out by sharing #StopTheShock info with our networks, and with some help from Twitter we can put some pressure on the FDA ourselves.
Here’s my suggestion for us to band together and get the FDA’s attention: Tweet “FDA: Stop Autistic Torture, Ban GED Shock Devices #StopTheShock” w/your thoughts to @FDADeviceInfo and @US_FDA every Tuesday, for as long as we need to.
The image above provides an example, please note that Twitter now allows scheduling. To schedule your advocacy Tweets in advance, just click on the calendar at the bottom and pick your desired Tuesday. You can switch up the message with different info on different weeks, or just copy/paste and keep hitting ’em with the same one.
Every day in the supposed “land of the free,” there are autistic humans being harmed by an organization that’s paid government funds to help them — and it has to stop. Please share information about this issue with people who wouldn’t otherwise know about it, and please help put pressure on the FDA to effectively ban the device.
Let’s make 2022 the year this torture finally ends.
I was using the toilet in my very narrow bathroom, and when I stood up my hair caught on a precariously-placed metal peacock statue. Had I been in my logical mind, I’d have simply untangled it; or, at worst, maybe I’d have had to trim those hairs.
But I wasn’t in my logical mind. I was having an autistic meltdown during a complete nervous breakdown.
I’d been unable to participate in society since 2015, when a congenital B12 deficiency nearly killed me (via nervous system demyelination). That trauma sent fibromyalgia symptoms through the roof, bringing pain that hit 8’s on the pain scale daily, body-wide. It led to homelessness and two trips to the psych ward to prevent my own suicide, but by 2020 I’d gotten myself pretty together, if insecurely so.
Unfortunately, 2020 proved capable of ripping away the life I’d painstakingly cobbled together, leading to increased neurological issues and an eventual diagnosis of Level 2 Autism, finally, after 38 years of confusion and chaos.
I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.
While I’m extremely grateful to have answers to my brain, more tools to manage it, and connection to a literally like-minded community — processing an Autism diagnosis after decades of thinking you’re just bad at being normal is a total mindfuck. Worse, people aren’t prepared to know how to react, they don’t know even what Autism in adults actually looks like and entails; it took me over a year to even find a therapist that had any experience with autistic adults, an all-too-common problem.
At first, I was able to cling to the positive aspects nonetheless, but then there was the trauma of realizing that I really am very naive, and all the realizations that followed that one: They weren’t really laughing with me. There actually are physiological reasons for my differences, and people did indeed take advantage of those differences. The teasing that I was once able to laugh off took on a new light — events like being tied up in a barn loft whilst being taunted, then left there crying for hours looked like actual emotional abuse, and not just “kids being kids.”
Additionally, I’ve been fighting a neurological disorder called Autistic burnout (clinically different from occupational burnout) since the beginning of the pandemic, meaning I’ve been dealing with extremely intensified problematic Autism traits. This means I’m unpredictably unable to verbally communicate, tolerate sunlight, navigate technology, drive, walk/move normally, and sometimes even think — which feels like a black hole is swallowing me, my consciousness, from the inside.
There are so many other aspects too, it’s my freakin’ brain. It runs everything.
Trying to deal with it alone led to a mental break last summer, not long after the diagnosis. After that scary event, I spent this whole year trying to get out of the extremely increased symptoms and general neurological hell that is Autistic burnout.
Unfortunately, it hasn’t been a successful mission.
The always-out Southern California sun feels like fire ants and its brightness makes my head feel like it’ll explode, verbal communication outside of my “safe group” often leads to autistic meltdowns, my executive malfunction and sensory sensitivity issues are off the charts, and in the months leading up this summer’s breakdown I had several neighbors who seemed amused by pushing me into meltdowns — which are terrifying, dangerous, and make the burnout so much worse.
All this while in near-complete isolation, especially since the pandemic.
Additionally, not long before the tangling, I learned that shock treatment — something deemed torture by the UN — is being done on autistic people, in my country, the United States.
It broke my heart and further shattered my mind. Add on heartbreaking realizations about my past, resurfacing repressed memories, and a brain that’s been completely fried — and you should have a solid idea of where my vibes were at when my hair caught on that statue.
I did not react calmly, I freaked the fuck out.
The statue immediately caught onto my metal shower hooks, along with much more of my hair. I sobbed and yelled as I struggled to get free, my mind torturing me in a completely different way. I don’t know how long it took to free myself from the hooks, but it felt like it took hours. After I finally did, I carried the statue above my head and exhaustedly fell onto my bed, forgetting it had netting all around it.
The statue caught on the netting and another battle ensued. After standing on the bed to get some leverage, the statue caught fabric elsewhere and sent me flying backward, hitting the back of my head so hard the drywall cracked and now has a head-shaped dent that’s nearly a hole. I eventually ripped the netting from its hooks and lied down — the statue, netting, and everything else that joined, still on my head, with the statue’s prongs painfully pressing into my scalp and threatening to break the skin on my skull, it’d already left puncture wounds, now scars, on my arm.
I nearly passed out, which could have been bad given the likely concussion; but luckily the noise of a garbage truck disturbed me, and I suddenly remembered that I own scissors, and that hair is just dead skin cells.
The statue was attached in multiple places around my skull, right up to the scalp, I remember feeling the cold blade of the scissors against it as I chopped off the hair that’d taken me years and years to grow out. (Three months later, I can still hear the sound.) Projectile vomiting started not long after that, then I just lied in bed for days, totally and completely out of it.
The first couple of months afterward were terrifying.
Nearly anything, and certainly anyone, could send me into a meltdown or a panic attack — I had so many of the latter that hooks started blocking my vision, and I feared that I’d have more seizures, as they’d happened a week before this whole episode started. I cried at the drop of a hat, and since my brain wasn’t functioning, I was dropping fucking everything.
It’s now been a little over three months, but the back of my head sometimes still aches and I’m just as in burnout as I was before. I’ve been committed to a wellness morning routine for years, and I’m still doing it, but many mornings I burst out sobbing during my meditation, it’s just all so much, and it’s been so long.
But I’m grateful to have a support system, even if it’s mostly long-distance, who fundraised to keep homelessness at bay for the next couple of months anyway and keep me talking often enough to feel at least semi-human.
Then there’s the whole freakin’ now I’m hairless thing.
For me, my long hair had been a symbol of healing, as I’d finally been able to grow it out after resolving several health issues — it was a persistent sign that I’m healing from the inside out, a reminder that the rest of me will get there too. It was otherwise pretty pointless as I’ve been in isolation for the vast majority of my time since late 2015, but I was attached to my tresses nonetheless. Silly as it is, they’d been a comfort to me during this very long crisis.
The first few weeks were hard in that aspect, looking in the mirror and seeing my bareass scalp was shocking and disorienting, but those surface-level worries were also a distraction from the more terrifying and heart-wrenching thoughts spinning in my head.
I’ve since adjusted to my new look, but continue to struggle otherwise. I spend a lot of time trying not to feel furious at the fact that this debacle could have been entirely prevented with a couple of timely diagnoses, but instead, a freakin’ B12 deficiency nearly killed me and undiagnosed autism led to complete physical and mental burnout.
I feel like decades of my life were stolen from me by a system that cares about profits over patient health, a system that just shrugs about why autism diagnoses are primarily given to white males; leaving far too many unbeknownst autists living decades of our wondering why we’re so different and trying like hell to pretend to be whatever the heck “normal” is.
It’s not fair. And not enough people are trying to change things. It’s daunting.
But life goes on. All I can do is continue to walk the tightrope between doing and moving enough to keep fibro, depression, and life chaos at bay; and doing too much, thereby falling further into burnout, and starting the whole recovery over again. (Yet again.) Good vibes appreciated.
I love this quote. After going through a difficult time, any semi-reflective person is likely to do some thinking on their weaknesses and faults; because how else does one avoid making the same mistakes?
But it’s easy to overdo ‘er. It’s common to not only own one’s errs, but to define ourselves by them, if only unconsciously. When you decide that you’ll never be good enough, things improving seems impossible. And the mental place of “why bother?” is no breeding ground for resilience.
Compassion for ourselves helps us get to a place of seeing ourselves as stronger and wiser for our mistakes, which makes trying again seem worth the effort and potential risks.
And compassion for others is how we become able to look at the world, and the people in it, as potentially trustworthy. This enables us to put ourselves “out there” again, one of many daunting-but-essential parts of getting to a place of resilience.
Becoming resilient is generally a prize that must be hard won, but the goods are mighty good indeed.
Interest in (and acknowledgment of) the autistic adult community has gone up lately, which is wonderful. People at large are starting to understand that even though we’re different, we still have a lot to contribute; and autistic-led shows like Everything’s Gonna Be Okay are helping people to understand just how wide the spectrum can be.
But there’s still a lot of confusion in the allistic (not autistic) community about what autism “looks like,” usually in reference to how a person appears, but you really can’t tell if someone’s an Autist based on observation.
In addition to the truly infinite variety of ways autism presents, many of us have been taught to mask our traits; so knowing what’s happening inside the person, the reasons behind our behaviors, is essential to recognizing autism in someone.
Being autistic is about having different wiring, literally experiencing the world differently due to neurological differences; resulting in varied sensory perception, ways of relating to the world, and reacting to it differently.
A comic strip by Rebecca Burgess popularized a way to visualize this internal experience that’s been embraced by the autistic community. It explains that most people think that the autism spectrum is a linear thing — a spectrum from “not autistic” to “very autistic” — but it’s actually more like a color wheel of various autistic traits, with Autists affected more and less in different areas (as well as times in our life).
Here’s that one:
I later came across another very helpful expression of the concept, created by autism assessor, Matt Lowry, LPP. I particularly like the use of medical terminology and the way it succinctly elaborates on each section:
Lowry’s information describes atypicality in the following areas (some info added for further understanding, but the list isn’t exhaustive):
Interoception: Internal senses (hunger, thirst, going to the bathroom), awareness of emotions, alexithymia.
Proprioception: Sensing body position, dancing, walking on toes, spinning, dyspraxia (clumsiness), motor control.
Exteroception: Sensing the outside world, hypersensitive, hyposensitive.
Stimming: Repetitive movements and sensory seeking for energy regulation.
SpIns: Special Interests, intense research, information hunger, collections.
Emotional Intensity: Meltdowns (neurologically different than “tantrums”), shutdowns, situational mutism, hyporeactivity.
Note: These things also add up to big-time fatigue (mental and physical), and often mental health issues, like anxiety, depression, and C-PTSD.
I wanted a version that allowed me to mark my trait measures so I can better communicate my internal experience, so I sketched one out that clearly segments the areas — allowing me (or any autistic person) to mark how much atypicality is presently experienced in each trait segment:
I originally made it for use with my therapist, but have also started tracking my trait levels for the purposes of both curiosity and managing problematic aspects. (I just got started, but already find it interesting that engaging in more stimming behavior — energy regulation — seems to be linked with experiencing less emotional intensity, which makes sense.)
For an autistic person to mark atypicality levels, right-click to save so it can be marked in a drawing program, or print it out and grab a marker. Consider the different aspects of each trait section and how atypical experience is at this time, then mark levels appropriately, like so:
I also imagine it’ll be useful in other realms of life when needing to explain to others how and why something is causing atypical issues. (If you’d like to have it on an object to help explain differences and accommodation needs, like a work mug, click here.) I hope it’ll help my fellow Autists feel more understood and allistic folks better understand.
(Note: Images and article reviewed and approved by Rebecca Burgess and Matt Lowry.)
WHEN AN AUTISTIC BRAIN GETS PUSHED TOO FAR, IT PUSHES BACK.
Being autistic is a mixed bag. While I love and am grateful for many of my autistic traits, there are many aspects that are just plain symptoms; like sensory sensitivities, exhaustion, and executive dysfunction that limit my ability to participate in life.
And sometimes those unwanted autistic bits, the symptoms, shoot to completely unworkable levels due to overexertion — this is called autistic burnout.
In 2020, a study supported by the National Institute for Mental Health and conducted by AASPIRE finally providedaformal definition:
Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
While the more commonly used meaning of burnout refers to occupational burnout, work-sourced depletion resulting in less ability to do it; autistic burnout is specific to Autists and comes from life demanding more than we can deliver without support (and support can be very hard to come by, especially for autistic adults).
Worse, autistic burnout is highly associated with suicidal ideation and behavior.
From the same study, “[Autistic burnout] is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.”
The study also quotes an Autist:
[My situation] became way too much. After I [quit my job], I found it increasingly difficult to speak to people I didn’t know and became very depressed. I was told that this was considered autistic regression by a therapist. I was unable to work for several years after this experience and attempted suicide/spent time in the mental hospital before being able to get my life back in order.
Again from the study, “Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.”
I can personally attest to these quotes. It’s like losing the ability to be who you are, it can steal your whole life.
“Autistic Burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input*, a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and/or mental health conditions.
The following criteria must be met; 1. Significant mental and physical exhaustion 2. Interpersonal withdrawal.
With one or more of the following; 1. Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning. 2. Confusion, difficulties with executive function**, and/or dissociative states. 3. Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g. increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communication with others.
The condition is not better explained by a psychiatric illness such as depression, psychosis, personality disorder, trauma- and stressor-related disorders. Extended or chronic episodes of autistic burnout may be preceded by brief or intermittent episodes.
*Cognitive input, refers to thinking and mental processing **Please note, executive function refers to ‘the mental capacity to focus attention, to process information while completing other tasks, and to plan and remember instructions.’”
So, basically — autistic burnout has the ability to make an already-challenged life completely impossible.
What Can Be Done to Prevent it?
Preventing autistic burnout in oneself is all about naming your needs and knowing that they are valid.
Being autistic in NT society, we get primed to disregard needs that aren’t typical, but when we ignore them for extended periods, it adds up…and the price is extreme function loss and general hell that is autistic burnout.
For me, just figuring out what my needs are after masking them for so long has been a process; learning to be present with my body, checking in with my nervous system, and watching my mind are helping me to identify when I’m pushing myself too hard, thereby sending myself (further) into autistic burnout.
Additionally, masking Autistic traits seems to be the most commonly cited reason to wind up in the seriously debilitated state that is autistic burnout, so it’s important that we aren’t masking too much.
From the first study, “By far the most prominent life stressor was masking, or the need to suppress autistic traits or disability, or pretend to be nonautistic.”
It also quotes a participant:
The metaphor I use is that long-term camouflaging and masking leaves behind a kind of psychic plaque in the mental and emotional arteries. Like the buildup of physical plaque over time can result in heart attack or stroke, the buildup of this psychic plaque over time can result in burnout.
We can’t just pretend to be neurotypical our whole lives, but via formal classes or persistent negative feedback from others, Autists (and neurodiverse people at large) get taught we ought to. Our internal wiring is different, so we’re different, and that needs to be more okay.
If you’ve got an Autist in your home or workplace, please listen to what their needs are, take them seriously, and know that the root of the problem is the most important thing.
Neurological overwhelm is usually the core problem, likely due to an environmental sensory issue; and in many cases, simple adjustments and/or accommodation tools will go a long way in helping the person to do their thing effectively without sending themselves into autistic burnout. Also, if we seem like we’re pushing ourselves too hard, just asking if we need a hand with something can go a long way.
The only way out of burnout is rest, rest, rest, and more REST, likely weeks, months, or even years — so taking breaks, making time to sort out accommodations, etc. is seriously worth it. And if you’re also in burnout, I hope you’re finding the rest you so desperately need; may we both be out of it soon.
Originally posted on An Injustice, I appreciate claps (you can do 50!) and follows over @ Medium! ❤
Being of Autistic neurology in a society made for neurotypical brains is incredibly difficult.
What’s easy for most people is very often incredibly uncomfortable, or even painful for those of us who are Autistic. One personal example of this is getting cold, which physically hurts my body. I’ve always gotten some teasing for my reactions, but ultimately I’ve generally (gratefully) been allowed to do what I need to adjust.
They’d been banned in the US, but last month the ban was overturned.
So, Autistic people, including children, are being literally tortured (again, defined by the UN)for offenses as small as refusing to take off a coat; or even for showing Autistic stims, like hand flapping.
In the United States.
A group widely trusted by the Autistic adult community, The Autistic Self Advocacy Network (ASAN), put together a petition to put a stop to this abuse—
From the petition (TW: physical abuse, ableism):
“Andre was a teenage resident of JRC. In 2002, he one day refused to take his coat off. The staff responded by placing Andre in restraints for 7 hours and shocking him 31 times. After this torture, Andre was in shock, comatose, and suffered burn wounds on his arms and legs.”
The petition has been up for weeks, but it still hasn’t reached a level where an influential amount of people actually know about it.
And perhaps more upsetting, when you look through #StopTheShock, it’s almost entirely us Autistic people doing the advocacy work.
The Autistic community is desperate for a paradigm shift in how we are viewed at large — as people in need of “fixing,” and/or made to be more “normal” — but surely everyone agrees that we shouldn’t be tortured for not being able to do the same things as neurotypicals, yes?
I don’t know what caregivers should do in regard to extremely problematic behaviors related to Autism, it’s horrible to hear the things that some families have gone through.
But I do know that my own problematic issues were/are rooted in being forced to do things that cause me intense discomfort or even physical pain, that these needs are almost never taken seriously, and that it has been truly dangerous for me in many cases. I also know that this sentiment is echoed throughout the Autistic community.
And I know this is something we need to figure out together, the world can’t go on just pretending like Autistic adults don’t exist.
Please hear us.
Like, really hear us: watch well-informed #StopTheShock videos made by people who are actually Autistic, watch the video testimonials of survivors, please listen to us *at least* in addition to the so-called experts who claim to speak for us whilst ignoring Autistic adults completely.
It’s scary that there’s been almost no neurotypical outcry over this.
This essay would include more helpful links (one more) but I had a mental breakdown that eventually involved seizures after I tried to really advocate for it last month, so I cannot focus on this issue for very long.
Many of us become incapacitated when emotionally triggered, as stressful emotions are largely processed via the nervous system and nervous system issues are a prime source of Autistic meltdowns.
We literally cannot change these things on our own.
We. Need. You.
Please sign, and please (please, please) share this petition.
Originally posted on An Injustice, I appreciate claps (you can do 50!) and follows over @ Medium! ❤
For people who are Autistic, knowledge about our neurotype — how our brains work — is incredibly empowering; and for those who care about us Autists, knowledge is empathy.
The present public perception of Autism is based mostly on neurotypical (NT) observations of our behavior. Focus is on the social implications, with people often referring to how we “seem,” but the internal Autistic experience is far more crucial for people to understand.
We need people to understand how it *physically* feels to be Autistic. It’s the only way our society will learn to stop unwittingly harming us, and better learn to include us.
Since we live in a society that was literally designed for a different neurotype, a different kind of brain, we are persistently expected to do things in a way that works well for most people’s brains — but that very often conflict with our own cognitive processes.
It causes very real problems, even for those who can mask their Autistic traits.
For me personally, it feels like pressure in my brain during tasks or environmental stressors (light, sound, conversation). I was able to pretend it wasn’t happening for years, but eventually, that masking took a toll on my brain, and I started having unexpected outbursts; which eventually turned (back) into full-blown meltdowns and body-wide physical pain.
In addition to the horror of the meltdown itself, which can last hours and involve self-harm, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also potential consequences for actions during the meltdown, as well as shame.
And in addition to adapting to NT processes, we have to constantly observe and adjust our behavior to the NT norms. It’s just too much.
Additionally, since Autistic representation in the media is very narrow and often misleading; people at large have no idea what it feels like to be of Autistic wiring, making it even harder for us to explain, especially given that so many of us struggle with efficient verbal communication and executive functioning difficulties.
Too much of the onus is put on us, and far too little on those whose neurology isn’t struggling with the task at hand. We need to be met halfway.(Desperately.)
I hope defining these terms in language that aims to explain how these experiences physically feel will help both Autists in better articulating their own experiences—dealing with neurological malfunction is confusing, to say the least! — as well as helping NT allies better put themselves in our shoes.
Of course, I can only describe how my experiences feel, the adage of “if you’ve met one Autistic person, you’ve met ONE Autistic person” always applies.
Knowledge really is the beginning of all empathy, it can create a bridge between people who have a chasm of differing life experiences.One person speaking up in an otherwise indifferent room can make all the difference.
7 Must-Know Autism Terms for Autists and Allies
Executive Malfunction: This term refers to our struggles with planning, remembering information, problem-solving, organization, and time management. This is one way to get that painful brain pressure I was talking about. For me, it generally happens whilst trying to use technology, verbalizing, remembering, filling out forms, doing finances, or when in Autistic burnout (see #5), freakin’ anythiiiiiiing. Ugh. It can be very problematic and can lead to expensive errors, dangerous meltdowns, and further loss of functionality — and yet, an executive malfunction does not indicate intelligence deficits, we’re just struggling to do things in a way that wasn’t designed for our different neurology.
Meltdowns: I’ve gathered that to the observer, Autistic meltdowns look like a “tantrum” or “freak out’’; but what’s happening is actually neurological overwhelm, often due to sensory overload. Despite how it looks, it is a very physical issue, not just emotional. *And they. Are. Terrifying.* For me, at first, it feels like a huge overflow of anxiety in my body, as if on a malfunctioning rollercoaster and desperately want off, but I’m trapped…then I just kinda, for lack of a better term, go berserker. I want to stop, to behave rationally, but I can’t. It’s awful, almost like watching myself from the outside. . And in addition to the horror of the meltdown itself, which can last hours and involve self-harm/suicidal ideation, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also the potential consequences for actions during the meltdown, and crushing shame, which can lead to worse. So, when an Autistic person says they’re fending off a meltdown, it’s crucial to take our needs seriously, because this issue is a very big deal and, at large, very misunderstood by the Allistic, or not-Autistic, community — especially regarding Autistic adults.
Shutdown: These happen for the exact same reasons and need to be taken just as seriously as a meltdown, even though it may not seem as serious. An Autistic shutdown is the brain’s way of directing all that overwhelm inward instead of outwards, causing the person to become non-responsive. For me, these usually happen after a meltdown, like my brain is just…done. (I’ve heard them described as something experienced in place of meltdowns as well.)
Going Nonverbal: When this trait is severe, this is completely literal; some Autistic people are nonverbal their whole lives. For me, this feels like my brain’s built a steep mountain around itself for protection, and eeeking any communication out (even typed) feels, and often is, simply insurmountable. It’s usually just when I’m dealing with burnout, but can also happen for brief periods when I’m overwhelmed. . For me, at the worst (*knocks on wood*) I can still mumble to myself, or my dog, but the words are likely to come out wrong and/or slurred and take immense effort to get out — which can lead others to very unfortunate conclusions, in addition to overexerting my already-taxed brain, which leads to further malfunction. So, via the hard way, I’ve learned to just not verbally communicate on those days!
Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus. . Everything from navigating the internet, to making calls, and driving can become a HUGE deal when you’re in burnout; it’s a very disabling condition made worse by blank stares and suspicion when we try to explain why we aren’t able to meet usual expectations. I’ve been fighting this mofo for over a year, but have experienced it for a duration as short as a few weeks, and have talked with other Auties who report it as short as a few days. Rest is the only way to get out of it, but think about resting your brain…it’s not exactly something our world is arranged for, is it? Ooofta.
Special Interests (SpIns): Clinically, this is where they accuse us of having “rigid/restricted interests,” but more knowing researchers are pointing out they’re our best shot to career success. In fact, that’s precisely how I’m writing this article despite burnout! These obsessions (Neurodivergence and writing here) seem to nourish our brain, like they somehow fuel it. They can be lifelong, or change with time, and most of us have more than one.
Stimming: Another community favorite! It’s described by clinicians as “repetitive motor movements,” and it looks like us moving our bodies differently than NTs, or otherwise doing things to engage sensory feedback — like playing with goo, staring at sparkly things, or touching velvet. These actions soothe the brain in a similar way to SpIns, and are often reactions to environmental, mental, or emotional stimuli. . It’s common to have different stims according to what happens, for example, I tend to handflap when I’m overwhelmed, I wiggle my fingers in front of my forehead when I’m thinking, and when in shutdown I love me some visual stimming. Some of us can mask the movements, but it’s bad for our brain function, so please exercise consideration and empathy before insisting we refrain. (See #1–5.)
With so much change needed it can be overwhelming, but it really does happen with one piece of knowledge at a time — individuals create change in this world. It’s the only way it can happen.
Originally posted on Artfully Autistic, I very much appreciate claps (you can do 50!) and follows over @ Medium!
There are many requests for allyship right now, and while it can be overwhelming to learn about disadvantaged communities while also navigating a global pandemic — it’s also crucial, and really quite exciting.
We’ve finally gathered the courage to share and listen to each other’s stories on a bigger level, expressing ourselves and working to understand what it’s like to live in circumstances unfamiliar to our own, and it truly does have the power to change everything.
This article comes from the Autistic community, of which I am a proud member.
It’s hard to be Autistic in a Neurotypical world, as things literally are made for a different neurotype, a different kind of brain. Additionally, instead of in the place of desperately needed information — like how to work with us, communicate more effectively, and why we do the things we do — we’ve got hoards of misinformation, stereotypes, and presumptions.
We’ve got a lot to contribute, and we deserve to be included, especially when it comes to being accepted into the workforce. But we’re not. And it’s not okay.
Though there’s a big organization claiming to speak for us, they mostly just tell the public not to bully Autistic children, which does nothing for the millions of Autistic adults trying to create a life against daunting odds. We need people to understand what it’s actually like to be of Autistic neurology, what it’s like to be in a body run via Autistic wiring.
In an effort to bridge the knowledge gap, I went to a trusted source for all things Autistic: the online Autistic community (specifically private support groups), and they/we had a whole lot to say.
This issue is, of course, triggering to many of us, so please try to understand that some of the answers will reflect that emotional upset.
Thank you for listening. 🙏
What We Need You to KnoW: Quotes from the Autistic community
“Autistic people are the experts on autism. Stop speaking over us.”
“I wish folx knew what an act of courage and vulnerability sharing one’s diagnosis can be, and that chuckling or otherwise invalidating their diagnosis is never ok. Normalize trusting that people know themselves better than anyone else could.”
“We don’t grow out of it.”
“That our way of being, interacting, communicating, experiencing the world isn’t less than.”
“It isn’t just on us to adapt to the norm to be accepted, to be seen and heard. It is just plain ableist to expect that of us. It is as much on you, the neurotypicals, the society at large to make the effort to understand us, as much as you feel that it is on us to understand you.”
“I hate when people say ‘oh everyone is a little autistic’ no not every one is a ‘little autistic’. You either are or you aren’t. You can have a trait that autistic people have but no, you aren’t a little autistic.” — Siera Komarek
“That we aren’t broken and don’t want to be ‘cured’” — Nina Stepalovitch
“They don’t call it a disability because I can function normally. There really are things I simply can’t do. Like any issue, it becomes a disorder when it becomes a problem that interferes with your daily life.” — Hayley Hackett
“Believe us when we say something about our experience? So many times I’ve said something ranging from ‘that’s too loud’ to even ‘I have a hard time understanding TV shows cause I’m faceblind and lose track of the characters’ and it seems like anything I ever say that doesn’t line up with their NT experience gets questioned and invalidated. Just accept that not everyone perceives stuff the same way you do.”
“I’m not a child. I don’t need to be treated like one.”
“I don’t miss most of what you might be thinking or feeling, it’s just that any given person could react differently to the same situation on different days depending on so many things, that I don’t want to presume to be able to read your mind.” — Brooke Northrop
“I wish parents of autistic kids would realise that the best way to address behaviour is to focus on the needs their kids are struggling to express. Many of the autistic ‘problem behaviours’ that parents get concerned about are actually just ways autistic people act when extremely upset. (Often it’s the way ALL PEOPLE act when they’re upset.) . We just get triggered by different things. so you’re sitting there trying to figure out what puzzle piece will make us whole or whatever — when actually we just need you to turn off the extraction fan.” — Leyla
“YT autism is not the default. Non YT Autistics need MORE support not less because the medical and societal establishment thinks YT and male and cis is standard when it just isn’t.”
“Diagnosis is only one way to discover that you’re autistic, you don’t become autistic the moment a doctor tells you you are, and people who have been autistic their whole lives know better about autism than the doctors ‘diagnosing’ it.” — Basil Pepperomia
“If someone tells you ‘This is really hard for me to cope with’ just believe them. Try to imagine something that is really hard for you to cope with — not how easy YOU would find it. […] If you can’t understand someone’s sensory struggles, social struggles, or processing issues that’s okay, but you need to accept that you don’t understand instead of assuming it doesn’t make sense or doesn’t exist.”
“Masking unwanted autistic traits is painful, draining, literally bad for our brains, and it’s scientifically associated with autistic burnout (extreme problematic traits) — which is associated with suicidal behavior. We can’t just ‘act normal’ for you all the time.”
“ABA is abuse. We do not need therapy, we need a more hospitable environment. Our sensory needs and cognitive processes are completely different.”
“Communicate directly. Stop using so much nuance and relying on others to understand something you’re not effectively communicating. Understand that our brains work differently, this is not something that can be treated or cured as it’s not an illness or injury.”
“Hoping someone will ‘take the hint’ Is unclear and ineffective communication.” — Tabitha Anne Shaw
“I’m so tired of people not doing communication.” — Siera Komare
“Not everyone can communicate verbally all the time.”
“Autistic brains are a natural, beautiful part of human diversity. It’s not some tragedy or disease. I’m not upset that I’m autistic. When I ‘come out’ to you you don’t have to make me feel better about it by saying how ‘actually it’s fine’ and Greta Thunberg is autistic too. Yeah I already know.” — Leyla
“Stop using the fucking R word, ever, for any reason.”
“A lot of cringe culture is just autistic traits. [In regard to NT acceptance] words never meet with actions.”
“Sometimes the music/tv is painfully loud and sometimes I can’t hear it very well, even if it’s at the same setting as before.”
“The main thing I wish people understood is that autistic adults with low-support needs like myself still occasionally need help, and that doesn’t make us less capable. Sometimes I need a little more patience than a neurotypical person, or my autism just needs to be taken into consideration a bit. . For example, not scheduling me as one of two servers on a holiday weekend with no other support staff. A neurotypical can compartmentalize that stress. I had a terrible meltdown and then shutdown. But I can handle any other very busy day just fine, just that specific scenario was one I shouldn’t have been in.” — McKala Hanes, 23, she/they
“You might see us stim, but ‘looking Autistic’ or ‘seeming Autistic’ isn’t a thing.”
“I want them to understand that we need different ways to work. Just because you can work 40 hours a week and do well doesn’t mean I can do the same. It’s really tiring and we need better accommodations to work so we can actually survive.” — Gabby she/her/hers
“Unless it’s actually hurting someone or disrupting something, don’t immediately scold someone you’re conversing with for being ‘too loud’ volume-wise. And if it is necessary, try asking before shaming. I have so many issues now with talking because I know I don’t always have awareness of my volume when I go off about something I’m interested in and that could be made so much easier if people were just kind.” — Tabitha Anne Shaw
“Some days are better days than others. Support needs vary depending on the day and circumstances. Just because I look put together and am fairly articulate, doesn’t mean I can feed myself or keep the house clean.”
“Eye contact and honesty are not related. Eye contact and listening are not related. Eye contact and taking something seriously are not related.”
Normal is inherently othering, divisive, and reductive.
Originally published in the Medium publication, The Ascent. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)
The word “normal” comes up a lot in our society.
We use it as an aspiration, “I just want to be normal,” or as a judgment, “that’s…not normal,” it’s even used like it’s a synonym for healthy, “that’s perfectly normal.”
I believe that all three uses are problematic for many reasons; but primarily because these homogeneous expectations have a very toxic effect on our mental health.
I feel that this is true even for those who feel they’ve achieved this mysteriously lauded act of mediocrity, but it’s especially toxic if you’re born in a body that excludes you from this supposed normality.
During my school years, the adult world told me that I was one of those lucky people, that I was normal, and that this was definitely a good thing — that I’d do just fine in life because of it.
I always knew it wasn’t quite true, and certainly faced much teasing despite this supposed normality, especially early on, and I certainly struggled to adjust to adult life more than my peers — but at 37 years old, I learned that I’m even less normal than I realized.
Last summer, I was officially diagnosed with Level Two Autism.
Society convinces us that we need to be less of ourselves in order to make more of ourselves. This is just bonkers.
This curveball brought many feelings, many of which were good, especially through the initial process of self-diagnosis; learning all about how my particular neurotype works while finally connecting to a community of people who quite literally think like me. There’s been much self-acceptance and empowerment since the diagnosis, it’s hard to explain the lightness that has come from knowing the physiological reasons as to why I am the way I am.
But, unfortunately, those weren’t all of the emotions. It was also really hard to learn that I was not only not normal, but that having tried so hard to pretend like I was had helped send my body and mind into malfunction.
After my diagnosis, I was tormented with endless painful memories slicing through my consciousness, each even sharper through this new lens; often making the other people involved seem cruel. Sometimes it even made me give up on humanity at large because most of them weren’t even “bad people” they were f**king normal people. It was horrifying, especially once I learned how high Autistic suicide rates are.
“Belonging is being somewhere where you want to be, and they want you. Fitting in is being somewhere you really want to be, but they don’t care one way or the other.” ― Brené Brown
The combination of that emotional maelstrom plus not having anyone to talk to about it brought continuous Autistic meltdowns, which led to dangerous public scenes, seizures, a terrifying mental break, and neurologically-disabling Autistic burnout that I’m still fighting nearly a year later.
The most overwhelming upset was, and is, because Neurodivergent people are made to believe we need to spend our precious mental energy on acting “normal” to be accepted and survive. (FYI: Faking your neurotype doesn’t leave much energy for the important stuff.)
And we aren’t the only ones — in addition to systemic issues and individual biases, BIPOC communities are given the burden of code-switching, which has toxic effects on mental health. As a fellow Medium writer puts it, “Code-switching causes more harm than good because it creates tension between self-expression and social acceptance.”
There are many more examples of how already-disenfranchised communities have to bend and twist to squeeze into “normal,” and it’s not at all limited to those who’re in bodies perceived as different in some way — there are all kinds of ways we can be “too different,” “too much,” or “not enough,” and they rarely have anything to do with lacking integrity or kindness.
Additionally, when crises happen in people’s lives, they often feel as if they’ve been thrust from the safety of being perceived as normal.
Whether it’s with issues regarding abuse, finances, rape, or the many other ways life can unexpectedly go pear-shaped — people who’re already going through a lot often then also have to deal with shaming from the people in their lives, as well as fearing they’re perceived as “having baggage,” or being “too broken.”
We wind up feeling like we have to hide in some way to be safe, which often leads to going through difficult times alone.
In my case, others continually encouraged me to hide the (many) ways of being I know now are Autistic, and it took me over 25 years to see that the opposite is true — we must show up authentically to have any shot at finding true acceptance and belonging.
“If you are always trying to be normal, you will never know how amazing you can be.” ― Maya Angelou
We’re all being taught the wrong message.
In effect, society communicates that our whole selves aren’t enough; it actually manages to convince us that we need to show up as less of ourselves to make more of ourselves. This is just bonkers.
Plus, it’s just a scam! The idea that being seen as “normal” keeps us safe is just an illusion, a test to see how far we can bend before we break. And if you lookattheheadlines in recent years, it’s easy to get the impression that the time to snap is upon us…
If you ask me, we’re collectively losing our shit because we’ve been convinced that we must be something we aren’t to survive, that we must be “normal,” because everyone else is and that’s just the way we like it.
But normal isn’t a freakin’ thing. (And it never was.)
Screw Normal, Go Be Your Best You
Comparison is about conformity and its paradoxical message is to “be just like everyone else, but better.” — Brené Brown
While some folks might truly feel they are whatever is presently considered “normal,” it’s safe to say most of us find the expectations dictated by the concept to be FAR too tight (to say the least ) — so we have to squeeze ourselves into an uncomfortable mold, conforming to unwritten expectations that don’t suit, and, mental health-wise, there’s a heavy price to pay for this self-erasure.
To prioritize being normal is to decide that *who we are* isn’t safe. This is not an okay expectation! And it does not improve the lives of those working to oblige, it very often does just the opposite.
When we squeeze ourselves into whatever’s currently typical, when we spend our days trying to “be normal” — we wind up wasting our energy and focus on losing ourselves, rather than on becoming our best selves.
I love the way another Ascent writer describes the empowerment of tossing conformity aside, saying her whole self is “far more powerful than the Swiss cheese cutout I used to be.”
And of course it is!! We need our whole selves to thrive.
7 Reasons to Stop Trying to Be “Normal”
Let’s break it down, here’s 7 reasons to stop trying to be normal:
“Normal” is not a thing. I moved from city to city, hoping to find a place where the whole me was considered “normal,” and while I never found it, I did discover that there’s actually no such thing. While it’s most definitely possible to feel not normal, and some people do feel it more often than others, normal is just an illusion. Life isn’t that simple.
It upholds toxic norms and power structures. The concept of normal is a moving target that’s defined a million ways, but most influentially by — and for — the people in power; the people in charge of media, the people at the top of the ladder, the influencers of our world. It’s an ephemeral nonsense concept that serves to uphold the status quo through shame. It’s bullshite, we don’t need it, and we certainly don’t need to waste our energy pretending to be it.
The concept is inherently othering. As discussed above, “normal” leaves a lot of people out. There’s just far, far, faaaar, too many ways to be not-normal, and humans are a beautifully diverse species — and we’re stronger for it! Diversity is an evolutionary advantage, it’s a good thing that we’re all different. We need to start letting people share their full stories, and we need to start fully listening to perspectives and experiences different from ours. Working to understand each other better is the only way to improve things.
Fitting in is very different from belonging. My life changed when I started reading the work of sociological researcher, Brené Brown. I’ve already shared a couple of quotes of hers, but here’s one more: True belonging only happens when we present our authentic, imperfect selves to the world — our sense of belonging can never be greater than our level of self-acceptance. In other words, when we squeeze ourselves into normal-shaped molds, we give up our ability to know real belonging due to denying our authentic selves a voice.
Save yourself mid-life crises (or end ‘em). Trying to be normal is basically committing to the role of who we think we’re “supposed to be.” And if we look around, it’s easy to see that this often creates long-term commitments we can’t keep. How many of us wind up totally rearranging our lives halfway through because our original choices don’t really suit who we are as we start to really know ourselves? What if we could save all the fuss by simply living true in the first place?
John F. Kennedy said it sucks. In his more dignified words: Conformity is the jailer of freedom and the enemy of growth.
It’s not important, kindness is. Normal is often used in a way that suggests some associate the concept with integrity, with being good, “someone nice and normal,” but they are completely different things. They have nothing to do with one another at large, but especially in societies where marginalized societies report systemic ill-treatment. It’s easy to see that normal is very often a big jerk. Acts of compassion and understanding are demonstrations of integrity, not looking or acting a certain way.
When we simplify the human experience to one word, it reduces people to stereotypes and pits us against each other.
As a species, I think we’re ready to graduate from this Us vs. Them paradigm that leaves nearly everyone scared to be seen as “them,” and all of us competing against each other instead of working together. (And we’ve got some very real problems to solve.)
We have to stop trying to put each other in boxes, we’re all wildly unique people — that’s the beauty of humanity! It is not something to hide.