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… More
How I Lost All My F-cks is a 3-part book dedicated to helping people in modern society shake off harmful conditioning that narrows the way we see one another, ourselves, and the point of this whole living thing. It aims to open up potentiality for authentic expression, living more consciously, and having more fun whilst doing so.
- Part I defines what our goal of fucklessness is, largely by sharing personal tales of fuckfulness and from finding my way to a place of more wholeness and freedom.
- Part II is a 30-day meditation challenge that includes short pieces meant to leave you in an uplifted and thoughtful state; pulling from sources like psychology, philosophy, the nature-oriented spirituality of the Tao te Ching, and more.
- Finally, Part III’s Fuckless Adventures will have you shaking things up with a series of dares, and opening your mind to further adventures by reading inspiring tales from lives lived boldly.
Together, it’s an average of 20 minutes a day or so, longer if you get creative with it.
The world is presently a confusing place, and this book will help you to better orient within it by teaching you to center in yourself. By the end of your fuckless experience, you’ll feel like your life has gone through a refreshing cleanse, and so has your mind—which is really your home, if you think about it. (And the lease is for the rest of your life…)
I’m seeking representation, so stay tuned for the release of How I Lost All My F-cks!
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 provided a formal 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 burnout.Autistic Burnout from the Inside
It’s more than just “burnout,” it’s neurological incapacitation.medium.com
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.
Disability has taught me a whole lot about these not-comforting-yet-still-ubiquitous moves.
Meg Hartley · 6 min read
Originally posted on The Ascent, I appreciate claps (you can do 50!) and follows over @ Medium! ❤
Ahhh, the empathy miss — that crucial moment when someone’s having a hard time and you really want to say the right thing, but after you speak there’s just a painfully awkward pause…you’ve stepped in it, and made things worse.
Or the reverse, you’re having a hell of a time and express that fact, and someone says something with the best of intentions — but rather than comfort their words leave you feeling invalidated, misunderstood, and worse than before you reached out.
As a society, we really aren’t great at holding emotional space for one another.
Luckily, a sociology researcher and famed storyteller named Brené Brown has been researching topics in this arena for well over a decade.
She’s covered many relevant ideas in this area, but one of the most helpful is probably her list of empathy misses from the book Dare to Lead.
Brené Brown and Empathy
These are common well-intentioned behaviors displayed in emotional times of need that completely miss the mark, leaving the already upset person feeling more so.
While I’ve certainly been on the side of empathy miss, as everyone has, I’ve also dealt with being on the diminished end recurrently since invisible illness and problematic Autism traits have taken over my life.
People genuinely seem to want to say things to make me feel better, but they’ll wind up invalidating my experience or changing the topic altogether; leaving me feeling not only still alone with the issue, but also feeling like I’ve erred by even bringing it up.
And these are mostly kind, truly well-intentioned, people; and this happens to all kinds of Neurodiverse and/or disabled people.
They are trying — we all are trying — but we lack tools. This stuff just wasn’t included in our social conditioning. (And in some cases, there were toxins in its place.)
Brené Brown’s 6 Empathy Misses
The concept of empathy is often described as a quality that people simply possess, or not, but while some folks do seem to have a particular knack for effectively understanding others’ feelings — Brown says empathy is also something we can work to become more effective at.
When dealing with nebulous and subjective issues, it’s often best to look at the failed attempts — or, what not to do. In this spirit, I’d like to present the 6 Empathy Misses identified by this sociologist who’s dedicated her life to helping us live with more heart.
This work branched out from her interest in human shame, with these being common unhelpful reactions after someone’s divulged an err. The list is from Dare to Lead, with explanation text from the book’s study guide, followed by my brief take:
Empathy Miss #1: Sympathy vs. Empathy
The friend who responds with sympathy (“I feel so sorry for you”) rather than empathy (“I get it, I feel with you”)
When faced with an immediate internal reaction of “sucks to be you,” the most caring words are often something like, “That sounds really hard, need to vent?”
Empathy Miss #2: The Gasp and Awe
The friend who hears your story and feels shame on your behalf.
Have you ever confided in someone, sharing a mistake you’re processing — and instead of empathizing, as you might expect a friend to do, they act horrified and judgy?
Yeah, everyone else too. Let’s start trying to remember our own f*ck-ups before condemning those who trust us with their struggles.
Empathy Miss #3: The Mighty Fall
The friend who sees you as perfect. They are so let down by your imperfections and disappointed in you (“I just never expected that from you. I didn’t think you would ever be someone who didn’t do well. What happened?”)
The thing about pedestals is that they’re really easy to fall off of — plus, you know, they’re complete and utter bullshit. No one is perfect. That’s not even a thing. When we expect people to be better than human, we lose our humanity.
Empathy Miss #4: The Block and Tackle
The friend who is so uncomfortable with vulnerability that they criticize you (“What happened?! What were you thinking?”)
Otherwise known as, “How to get people to never trust you again,” this deflective move helps those scared of feels to avoid their own self-reflection — and it’s really freakin’ common. We live in a really judgy society and that kind of persistent energy can lead to folks becoming really defensive, which often turns into lashing out with condemnation.
I’ve (slowly) learned that compassion is the way out of judgment. When I’m hurt and my mind gets hardened over the WTF-ness of someone’s behavior, I do my best to imagine there’s a reason I’m not aware of before doing anything about it. It’s hard, but it’s important to remember that perspective really is everything.
Empathy Miss #5: The Boots and Shovel
The friend who is all about making it better and, out of their own discomfort, refuses to acknowledge that you can actually make terrible choices (“You’re exaggerating. It wasn’t that bad. You rock. You’re perfect. Everyone loves you”). They are trying so hard to make you feel better that they’re unable to connect with your emotions.
This is another popular one. When feeling shame, and wanting to talk about the mistake — something that can lead to not making the err again, as the mind’s verbally articulated why it’s a nope — but someone just won’t believe you, it’s invalidating at best; and, at worse, it enables problematic behaviors.
Empathy Miss #6: If You Think That’s Bad…
The friend who confuses “connection” with the opportunity to one-up you. (“That’s nothing. Listen to what happened to me one time!”)
This one’s another one that often happens with truly good intentions, wanting to help the other person see that things could be worse; but it’s actually invalidating, and leaves the hurting person still alone in the issue they were hoping to talk to someone about.
Empathy Miss #7: I Can Fix That!
The friend who immediately jumps to problem-solving rather than just being with you in your experience.
Most of us struggle with this one, especially if friends often come to us for help solving problems. One helpful empathic reply is to acknowledge the feelings and ask, “What does support look like?” This gives the person in struggle the opportunity to say, “Just listening helps” or “Can you help me figure this out?”
I’ve got nothing to add here, such wise words.
And a recap from the Daring Greatly study guide:
- Be kind.
- Be curious.
- You don’t need to fix it or make people feel better. Connecting and listening is powerful.
- Try to understand how the person is feeling (not how you might feel in the same situation).
- Help people know that they are not alone in their feelings. Even if you’ve never had that experience, you might know the feeling.
- Let people know that you are grateful they shared with you.
- Allowing opportunities for second chances. When we miss the opportunity to show empathy or when we would like the opportunity to do it better, we can say, “I’d like to circle back.” In this context, circling back means practicing empathy by trying again.
A movement called #StopTheShock is in crucial need of public support.
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.
Not all of us have it so lucky.
At the Judge Rotenberg Center in Massachusetts, USA, there are shock devices in use called that the United Nations (UN) Special Rapporteur on Torture called torture in 2013.U.N. Report Suggests Some Autism & Addiction Treatments Are Akin to Torture | TIME.comSo-called treatments for drug users and the disabled in some places of the world-including the U.S.- are far from…healthland.time.com
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.
A lil’ knowledge to help you be an effective self-advocate or ally
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.
Normal is inherently othering, divisive, and reductive.
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 look at the headlines 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.
Screw “normal.” We don’t need no stinkin’ boxes.
The term is no longer in the US’s diagnostic manual for very good reasons…which include Nazis.
Originally published in the Medium publication, An Injustice!. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)
In early May, Elon Musk made a personal announcement while hosting the NYC-based show Saturday Night Live, one that’s upset many autistic people: “I’m the first person with Asperger’s to host SNL, or at least the first to admit it.”
It’s okay if you’re not seeing the harm in that.
US society (and global perception at large) is becoming more conscious and undergoing many simultaneous changes in perception, like a massive detox — people at large are still ill-informed of impactful issues concerning disadvantaged communities, and the autistic population is no exception.
All we can do is listen to a variety of people from the affected communities, and learn.
In this case, community objections include the smaller issues that Dan Aykroyd was actually the first autistic person to host (which was uncool to gloss over), and the word ‘admit’ could reflect internalized ableism — but the main issue is around the term ‘Aspergers,’ which has become controversial, especially here in the US.
It was removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013, when Asperger’s Syndrome was absorbed by Autism Spectrum Disorder (many in the community prefer the more-descriptive Autism Spectrum Neurotype).
The associated functioning labels were also dropped due to harmful outcomes: those labeled “low-functioning” experienced opportunities being withheld despite ability and many in the “high-functioning” category were conversely presumed able to do things that they could not, therefore denied support and accommodations, leading to meltdowns and reduced functionality (and worse).
Basically, the functioning labels were a hot mess that left a lot of autistic people traumatized.
The new way has many flaws as well, mostly for also having a vague approach that leads to similar experiences of ableism — but at least it’s a little more specific and refers to support needs rather than pretty directly implying ability in the verbiage. Now, formally diagnosed autistics are assigned a Support Level at diagnosis. (Self-diagnosis is also widely accepted in the community due to excessive bias and barriers in the diagnosis process.)
I have a diagnosis of Level 2: Requiring substantial support. I was just diagnosed last year, but suspect I’d have been a Level 1 around 6–7+ years ago, as the problematic areas have greatly increased; something that’s common among autistics who mask their traits.
It’s presently a helpful distinction for me, as being without support has resulted in extended burnout and frequent meltdowns — however, it’s easy to see how it could backfire in very similar ways, especially as troubling traits fluctuate.
To provide an example of how problematic autistic traits can be fluid,
at this time I’m capable of doing things like writing essays about my current special interest (ta-da); but if I were to try to do this in an office, early morning hours, or even attempt to change topics, I’d very likely wind up having a meltdown, which would then take days (or more) to recover from.
I wasn’t always so sensitive in those respects and easily flew above the radar by subconsciously masking my traits (as happens, that backfired in a multitude of ways, including increased need for support).
Presently being a Level 2 doesn’t mean that I’m more intelligent than a Level 3, or less so than a Level 1.
These levels have absolutely nothing to do with intelligence, nor capabilities at large — instead describing our need for support/accommodations in order to function in our (neurotypically-biased) society.
The DSM describes differences in ‘social communication’ and ‘restricted interests & repetitive behaviors’ (the latter of which are affectionately known as special interests and stimming in the autistic community). This is a change from the old paradigm, in which those with Aspergers were widely viewed as being more intelligent due to superior intellectual development, a perception that has not died.
Public perception has very real effects.
When Elon Musk publicly disregarded the changes of DSM-5 in its home country, he portrayed himself as someone more intelligent than the autistic community at large; and the continued use of the term has negative ramifications on other autistics.
He could have used the updated terminology, helping to erase harmful stigma via a show that’s been a US culture staple for decades — but instead, he perpetuated it.
Sure, maybe he didn’t know, but given his fame and legendary genius status it’s safe to presume that someone gave him a head’s up, or he got there on his own; particularly since the change is nearly a decade old, and he’s been based here since 1995.
The term ‘Aspergers’ got its start in Germany, 1934, when Dr. Hans Asperger discovered Nazi psychiatry.
In a 2018 New York Times article, researcher Edith Sheffer described his work on autistic children: Some laud Asperger’s language about the “special abilities” of children on the “most favorable” end of his autistic “range,” speculating that he applied his diagnosis to protect them from Nazi eugenics — a kind of psychiatric Schindler’s list.
But this was in keeping with the selective benevolence of Nazi psychiatry; Asperger also warned that “less favorable cases” would “roam the streets” as adults, “grotesque and dilapidated.” Words such as these could be a death sentence in the Third Reich.
And in fact, dozens of children whom Asperger evaluated were killed.
Yes. You read that right.
The term Asperger’s is directly aligned with the murders of dozens of autistic children — all for the sake of Nazi eugenics, or wealthy white dudes deciding who’s “fit” to live life on Earth.
Another horrifying passage from the NY Times article: One of his patients, 5-year-old Elisabeth Schreiber, could speak only one word, “mama.” A nurse reported that she was “very affectionate” and, “if treated strictly, cries and hugs the nurse.” Elisabeth was killed, and her brain kept in a collection of over 400 children’s brains for research in Spiegelgrund’s cellar.
Sooooo, that’s where the term ‘Asperger’s’ comes from.
It’s Time to Do Better
While I understand that it’s hard for people to just have their diagnosis terminology switched on them, the changes in the DSM-5 were made for crucial reasons (more than discussed here) — and the update is having a really hard time gaining awareness.
This lack of societal knowledge means the continued perception that those with “Aspergers” are more intelligent/capable than those identified using the term “autistic.”
I want to emphasize that not all autistic people are aware of these US-based changes, and there are also situations where continued usage is logistically necessary. I don’t want to imply that individuals, autism organizations, and social media figures with the term in their branding are bad for not having changed.
We can only do what we can do. I get it.
But Elon Musk is not a likely-to-be-cash-poor non-profit or YouTuber, he is literally the richest person in the world and he’s also one of the most well-known.
He could have easily helped, but instead he did the opposite — and while that (alone) isn’t worth vilifying him for, the move shouldn’t just be overlooked.
It needs to be learned from.
Another quote from that NYT article brings this point home: Does the man behind the name matter? To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither. His definition of “autistic psychopaths” is antithetical to understandings of autism today, and he sent dozens of children to their deaths.
Other conditions named after Nazi-era doctors who were involved in programs of extermination (like Reiter syndrome) now go by alternative labels (reactive arthritis). And medicine, in general, is moving toward more descriptive labels. Besides, the American Psychiatric Association has ruled that Asperger isn’t even a useful descriptor.
She wraps up the essay with a request to the reader: We should stop saying ‘Asperger.’ It’s one way to honor the children killed in his name as well as those still labeled with it.
People act like psychology was built on the backs of giants, but it wasn’t.
Asperger may be the most offensive of offenders, but he’s far from the only toxic contributor.
It’s time to start looking at things from a more inclusive, efficacious, and empowering perspective.
We need to truly acknowledge that everyone’s worthy of life, even the (many) demographics that struggle to thrive in a society that was not built to include us — and moving away from this harmful term is one step towards those ends.
Plus, tips for your own life-changing authenticity mission.
The journey to my summer of 2020 autism diagnosis — at 37 years old — was a lifelong one with a jillion ingredients, but my 9-year authenticity mission was certainly a crucial one.
It started one evening in early 2012, the night I realized I didn’t know who I was anymore.
I’d spent my twenties trying to find my people, my place in society — and after far too many job changes, ill-fated relationships, and moves, I’d come up short. I still had no idea where I fit, and worse, all that external striving had led to feeling like I didn’t even know who I was anymore.
I was 29-years-old; confused, broke, 40 pounds overweight, isolated, lonely, burnt out, and just completely lost.
I knew I had to find my way back to myself. But how?
Luckily, like many late-diagnosed autistic people, I’d spent the vast majority of my college credits trying to figure out the human condition, taking every sociology, psychology, and philosophy class that I could.
Brené Brown rocked my world with quotes like, “If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
In one called Eastern Philosophy, I was taught how to meditate, and why I ought to. I fell in love with it immediately but my practice was sporadic at best, as I was too focused on the external world to really focus on my inner one.
Additionally, my insides didn’t really match my outside, and this fraudulence was all I could think about when I tried to convince my mind to sit still in meditation. It was painful.
However, that class also introduced me to mindfulness, which can be done whilst also doing life-stuff, so I had a much easier time keeping it up.
That decade of consciously observing my headspace before realizing I was lost created at least a semi-awareness of my mind’s contents; so I knew that I spent most of my enjoyable thoughts contemplating the nature of reality, just philosophizing my lil’ brain and heart out.
It meant the world to me, but the few times I’d tried bringing these ideas up — ideas that examine our society, reflect on spirituality, and figure out how to live a soul-satisfying life — they usually resulted in a comment on my strangeness, a giggle, or a rolled eye.
And the rest of my thoughts, well, they were heavy on the grieving, pining, distressed, and self-effacing.
It wasn’t a great time to be me.
But, externally, I did my best to keep the “too weird” musings and endless sad thoughts to myself.
When I socialized, which was less and less by the year; I had a tendency to engage by asking questions and agreeing.
Talking about myself brought pressure because people very often reacted differently than expected, plus the sad stuff had a way of seeping out. Like many autistic people who mask their traits, I commonly felt like I didn’t have much to contribute, or that it wasn’t wanted.
Because I was using these social occasions, which were usually alcohol-centered, in such a deflective and people-pleasing manner — I usually felt like less after them.
Despite having genuinely laughed, enjoyed listening, even talked some story myself; I was usually left obsessing about what errant looks and comments had meant, wondering why I never felt seen, and if anyone else really did. (Do they?)
My Outer World Falls Away
So, after that 2011 revelation, having finally admitted to myself that I was lost, I sat down on my living room floor and meditated.
And, though my practice wasn’t daily, I kept meditating.
Additionally, I started changing the way I approached the internet, heading straight for personal development articles. That’s how I discovered authenticity maven, Brené Brown.
She rocked my world with quotes like, “If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
It was so spot-on, it felt like a personal attack.
After decades of wondering what my problem was, I had found my problem, at last — I wasn’t behaving authentically, and it was eating me alive.
My life got even more tumultuous after that, so the next decade or so would be a complete and total shitshow; but my mission co-occuring helped ensure that it was a highly centering one.
The primary cause of the shitshow, though there were many, was a congenital B12 deficiency that’d been prolonged by a homozygous MTHFR mutation; I’d nearly die from it in late 2015, with the doctor saying, “132 pg/mL is extremely low, you’d have been paralyzed in months and dead within a year.”
It’s been said that travel can help uncover who we really are by removing our own society’s influences; well, I didn’t go far, but my homeless experience did that for me.
The three years between starting my authenticity mission and getting that diagnosis were filled with ever-growing mysterious symptoms, moving too many times, and much professional chaos — however, this didn’t impede my authenticity mission, I kept right on at it.
The most important change I made was no longer having my “after-work beer(s),” something I’d presumed was normal from watching TV.
Instead of spending my nights zoned out, I started to tune in.
I used my time after work to start writing again, publishing personal essays on sites like MindBodyGreen, TinyBuddha, and Elephant Journal; as well as starting a blog largely about how to apply spirituality to messy ol’ life.
Additionally, I started a happy hour club for spiritual people; which brought much enlightening conversation, memories with many lovely people, and a great friend that I still have today.
All of these centering activities set me up to emotionally survive the experience I’d recently started on that diagnostic day: living a near-completely solitary life — just me, in my isolated apartment, alone with my mind. All. The. Time.
I’d leave weekly for a doctor/grocery trip, made possible by a Medicaid ride service; but other than that and maybe 10 precious visits spent with loved ones, I was all alone — for 22 months.
If I’d gone straight from that lost evening to such an isolated life, I wouldn’t have been able to survive the darkness that inhabited the ignored corners in the back of my mind. (Honestly, it nearly killed me anyway.)
But since I was a couple of years into working on being a more whole me, that unwanted isolation also presented a unique opportunity — I would truly see who I was without the ever-present influence of other people.
At first, I’ll admit that I just refixed my excessive other-orientedness to Facebook; a junkie looking for any kind of social fix, any shot at connection, at feeling understood.
But that’s not really what Facebook is for.
It became depressing, maybe it’d always been that way and I hadn’t noticed, but watching my world go on without me definitely wasn’t helping, so I stopped, and haven’t let myself idly scroll there for close to five years. While I know and care about those people, so miss knowing what’s going on with them; it’s really helped sort out my issues around insecurity, which are directly related to feeling like it’s safe to act authentically.
Of course, it was still a tremendously difficult time, and I had many personal relationship issues and related insecurities that whirled around in my head — but at least I wasn’t persistently feeding them new content.
And, eventually, I got to a place of feeling really, truly, centered.
I was insanely stressed trying to get marketing clients from my sickbed in order to pay bills, plus all the health chaos, so this experience was not at all expected.
This inner calm was actually so unfamiliar that it was a bit jarring.
I’d just gotten out of a long meditative bath, and laid down in a sun puddle — and quite suddenly realized I felt just thriving, it was like an energetic peace had been waiting under all my other-oriented mental bullshit and it’d suddenly filled my heart and spread to the rest of me; it was wildly inspiring, it felt like a peace that was ready to bust out bold works of creativity and authenticity.
And it did.
Getting to the Root of the Issue, at Last
That feeling, if only sporadic, helped me power through the rest of my time alone in that apartment — and then it helped me survive eviction, three months of being a guest whilst sick AF, and seven months of living in my barely-functional 1993 Camry.
If nearly two years alone is great for an authenticity mission, then losing the societal comfort you’ve always known and falling into abject homelessness is fan-f**king-tastic.
(Don’t get me wrong, I don’t at all recommend it, but it was wildly helpful, nonetheless.)
It’s been said that travel can help uncover who we really are by removing our own society’s influences; well, I didn’t go far, but my homeless experience did that for me.
My society may still have been everywhere I went, but I felt removed from it like I was no longer a member; that detachment hurt, but it also gave me perspective on what really matters to me and helped me release ideas for my life that no longer fit.
My diagnosis has also been a beacon of hope, and a lens for the world that finally makes sense, at last.
I eventually pulled myself out of homelessness (and into sensory-overwhelming roomate-ness), then finally won a disability payment for a couple of years of the (still-ongoing) health crisis, and that combined with paying writing gigs allowed me to get into my own place again, at last.
And it was here, in my lovely little space, that I realized my authenticity problems weren’t just about insecurities and fears, and my people problems weren’t just a result of my messy life — it was here that I’d finally learn I’m autistic.
When I moved in, I was feeling pretty darn good, lifewise. I finally had work I could do with health needs, it was fulfilling, I was finally making survivable money; and, after four loooong and lonely years, my health was manageable enough that I was out trying to make friends regularly, at last.
I was so excited to meet people in my new community as my wholly authentic self, and sans all the unappealing life-chaos…but it didn’t go as well as I’d hoped.
Even though I was looking for my people in places where I was likely to meet like-minds, and even though I was talking about the common interest at hand, not life-drama — they still looked at me funny after I spoke, like I wasn’t doing it quite right.
They still thought I was hitting on them, or otherwise misread my motivations. They still totally misunderstood the things I said. They still made inaccurate assumptions. And they usually stopped returning my texts after knowing me long enough.
I didn’t know it yet, but my authenticity mission had largely unmasked my autism, so people were reacting to that differentness; plus, now-ineffective-yet-ingrained masking behaviors just confused matters further (still do).
By the time the pandemic started, I was relieved to no longer engage in the heart-wrenching activity of trying to meet people who truly get me.
However, the shocks of 2020 quickly overtook that relief, and the meltdowns that I’d been attributing to physical pain from health issues, went from monthly-ish, to several times a month, even though much of that body-wide pain had dissipated.
The meltdowns continued to increase and by the end of June, they’d taken over my life and neurological health — each one causing hours of being unable to do anything but cry, scream, zone out, pace, or, honestly, self-harm (autistic meltdown norms), and days of intensified symptoms afterward—they are truly terrifying experiences.
Additionally, working on becoming a more whole version of yourself won’t just help boost your joie de vivre, it can lead to you having a better impact on the world, yours, and ours.
I sought answers by looking into the neurology of Highly Sensitive People, something I’d been thinking of as “muggle empath,” and kinda wrote off due to already doing all kinds of spiritual work on owning this sensitivity. But I quickly discovered that there are actually neurological differences, so kept digging and found an article asking if HSP’s were actually representative of the female autism phenotype.
My life flashed before my eyes as I read the article, and it kept on doing so when I moved on more information, my brain suddenly doing its hyper-focus thing — an occasional autistic perk that allows me to work on chosen topics with great speed, for many hours.
And, via the grace of telemedicine and a serendipitous therapist recommendation, I was diagnosed with Level Two autism just a few weeks later.
(My diagnosis experience is not at all typical, I got lucky — as a result of this systemic hurdle, self-diagnosis is widely accepted within the autistic community.)
While it’s been extremely overwhelming (to put it mildly) to learn that I’m actually autistic after nearly four decades of thinking I just sucked at being normal; my diagnosis has also been a beacon of hope, and a lens for the world that finally makes sense, at last.
Additionally, I’ve also been able to join online support groups for autism (and late-diagnosis autism specifically), which has felt miraculous. I log onto those groups and get to read posts that I could have written — it’s uncanny and wonderful.
I’m not a freak. I’m just autistic.
And now I know there are all kinds of (literally) like-minded people out there; I have a word to describe people who think like me, a word that can help me find more of them, and a word that’s helping me get tools so I may get better and actually go meet them.
Without my autism-unmasking authenticity mission, I may have just been a failed neurotypical forever; doomed to have therapists always looking at me quizzically, never providing the answers I so desperately needed.
Regardless of your neurotype, getting real can help you get your answers.
Authenticity can teach you how to can best live by introducing you to yourself, your whole self—and anything else is one shaky foundation to build your life on (trust me).
Bring More Authenticity into Your World
Your authenticity mission isn’t likely to result in an autism diagnosis, but it can still help shift your life into one that truly suits you — and you don’t need to almost die, endure years of isolation, nor become homeless to do it.
Additionally, working on becoming a more whole version of yourself won’t just help boost your joie de vivre, it can lead to you having a better impact on the world, yours, and ours.
When we become more aligned with who we really are, we become more present, more willing to engage, and better able to express ourselves in ways that are helpful — as well as more interested in doing so.
Things might shift a bit, but when they settle, it’ll be somewhere we can better grow.
- Plan alone time. Years in isolation aren’t necessary for everyone — thank goodness! — but quality solitude is a mandatory step in becoming more authentic.
- Pick up a childhood hobby. For me it was writing, maybe for you, it’s horses. Whatever it is, pick it back up and remember what made you love it, even if it doesn’t recatch your fancy it’s likely to inspire something that will.
- Stop gossiping. Help rein in the urge to compare by curbing the urge to know and spread others’ business, as well as reconsidering how you experience social media behavior — is it focused on others, or is it focused on what you’d like to bring into your life?
- Acquaint yourself with norms in other circles. While it can feel like our personal world is the entire world, “normal” isn’t a freakin’ thing, and reminding ourselves of that helps relieve the pressure to live up to others’ expectations.
- Meditative time. Maybe it’s full-on meditation, or maybe it’s a walk in the woods, but get quiet and see what’s really on your mind to connect with your whole you.
- Keep reading about it. There’s no need to reinvent the wheel here, and learning from other people’s mistakes, detours, and mishaps is a highly efficient way to approach any task — so devour any authenticity and personal development materials that catch your eye.
Best wishes on your journey! There will probably be growing pains and some awkward feelings, but certainly no more awkward than pretending to be less of yourself.
Remember, you need your whole you to thrive — this journey is worth it.
…and the valuable lessons I learned from the experience.
It was a long and tumultuous journey that led to me living in a semi-functional 25-year-old Camry for the end of 2017, and much of 2018.
It was also wildly unexpected.
I’d graduated college with a decent GPA, had a semi-impressive career in marketing, threw charity fundraisers, volunteered and held positions on non-profit boards, cared for my people, and made sure they knew it — I had trouble managing sometimes, but did alright and was giving life my all.
And, up until my late-20’s, I seemed pretty healthy. I knew I’d had a cacophony of seemingly random issues my whole life, but they didn’t interfere with things too much and were basically hideable.
Then, in 2009, I attended a get-together that left many of us with H1N1, or the “bird flu.” (I didn’t have the wherewithal to get to the hospital, but several of their cases were confirmed.) After that harrowing experience, the aching body pain never went away; and while I’d always seemed to be more exhausted than those around me, it got much worse.
Unfortunately, I’d have been screwed even if I’d missed that pandemic, as there were already several other health issues going on.
Physiologically, I was a walking timebomb.
For one, I was born with a B12 deficiency, which was prolonged by a homozygous MTHFR mutation. This means that my nervous system was slowly demyelinating, losing its protective cover, and causing random issues throughout my body.
Some of these are kinda funny in retrospect, like my not being able to taste salt very well, which led to me using it excessively. (In my teens, movie theatre coworkers once pranked me, dumping a “ridiculous!” amount of salt on my popcorn while I was away — I didn’t even notice. Mmmm.)
Others weren’t funny at all, and still aren’t.
These issues mostly had to do with mental health (and unhealthy coping mechanisms), but those issues had another massive factor — undiagnosed autism.
I wouldn’t know it until 2020, but I’m a great example of what’s presently called, “the female autism phenotype,” which can present in any gender. Though there are many differences in this presentation, the key difference is having a better ability to adjust to social situations by doing something called masking, essentially faking normal; which helps cope in the short-term, but also creates a host of mental and neurological health issues.
I have another mutation that makes me high-risk to pandemic flus, so the physical trauma of H1N1 certainly played a role, but that aching pain I had, often diagnosed as fibromyalgia, is common in women with autism.
I finally got my fibro diagnosis right before homelessness, about a year and a half after the B12 deficiency was diagnosed — them telling me, “132 pg/mL is very low, you’d have been paralyzed within a few months and dead within a year.”
By my B12 diagnosis, late 2015, I was already basically on bed rest, but stabbing myself every day with a form of B12 called hydroxocobalamin — after learning the hard way that the cheaper, more common, cyanocobalamine can lead to panic attacks, yikes — was leading to many of the random symptoms to drop away.
Things were starting to improve, but since I was missing key diagnoses, I didn’t know what I needed to do to heal. I regularly overdid it, which would result in weeks of make-you-cry pain — but I had no idea that’s what was happening because the symptom flares can come up to 5 days later. Plus, it’s also really hard to tell when I’m pushing it, and the weather is a huge factor; which took over a year of seasons to sort out on my own.
It was maddening. (To be honest, still is. Fibro is no freakin’ joke.)
I was in that bed for about 20 months.
I wish I could tell you that’s how long it took me to get better, but that’s how long it took me to lose the bed.
I did everything I could to earn, but I just couldn’t keep it up. I’d get more productivity hours as time progressed and my intensive wellness regimen did its thing, but that first year I had a marketing client that could afford just 9 hours a week; and I was repeatedly overdoing it trying to do that and keep up with life, my never-ending UI case (that looked statistically bleak due to my being young-ish, 33 when I applied), doctors appointments, prescriptions, etc.
Shit, just going to the grocery store very often led to public meltdowns that meant recovery days of no productivity and horrendously intensified symptoms.
I had a handful of good health days that coincided with an event or visitor so got to go out into my old world a few blessed times (usually aided by self-medicating with wine) — but the vast majority of my days, I was all alone in my isolated apartment, all day, all night. (Homelessness aside, I’ve basically been in lockdown since 2016.)
I regularly went several months without seeing a friendly face, or even talking to someone on the phone.
The idea of ‘peopling’ was nearly always just too much. Plus, I didn’t have very many friends in my newish city; most of the people who loved me were back home in Alaska, hundreds of miles away.
So, it was just me and me, alone in that apartment.
Me and me, trying to heal. Trying to get through physical therapy. Trying to remember to take too many pills that did too little. Trying to navigate systems that very literally make my head feel like it’ll explode. Trying to stay on an intense allergen-free plant-based diet on a teensy budget.
Trying not to cry all day, every day.
And trying like hell to avoid homelessness.
On that last one, we didn’t succeed.
The Bottom Falls Out
Though more (very part-time) clients teamed up with donations from friends, acquaintances, and total strangers, as well as my very patient landlord, to keep me homed for nearly two years — I lost that studio apartment in the summer of 2017.
I’d been told by several health professionals that moving from rainy Portland, Oregon to a drier and hotter climate would help my condition, so it seemed serendipitous when a friend I hadn’t seen in well over a decade offered to let me stay with her in Los Angeles county.
This outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, had been.
That climate advice was spot-on, and my symptoms decreased dramatically in the hot summer weather; I don’t believe I’ve had to use my walker even once since the move, which I’d been largely dependent on. However, living in someone else’s home had the opposite effect on my undiagnosed autistic brain, and I went into what I now know is autistic burnout; leaving me holed up in my dark, quiet, A/C-free room most of the time.
The housing situation ended a week or so after I climbed out of that then-mysterious mental hole, and a couple of days after I was directed to Skid Row, where I discovered the public housing waitlist was 11 years — and there was a lottery to even get on the list.
Once it really hit me that it’d finally happened, that I was really homeless, my mental health became dangerous to my safety. Having lost my mother to her own hand and fearing the same fate, I checked myself into a mental health ward for the second time since the health crisis started. (But that’s another tale.)
And when my 72-hour hold was up, my 7-month misadventure in homelessness really began.
A Whole New World, Sort Of
In spirituality, we often say the phrase, “in the world, but not of it.”
Homelessness is kinda like that.
The outside-looking-in sensations of living with undiagnosed autism were infinitely multiplied by being in the same spaces as others, while also not being like everyone else in it — having a secret likely get me scorned, shamed.
I used face cleansing clothes and dry shampoo to help keep me looking like I belonged in our society, but I’ve never felt more like an outsider. (And I’ve felt like an alien my whole life, so that’s pretty bad.)
Though warmer, this outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, was.
Every shelter I called was full, which is normal — if you haven’t caught on by now, our safety nets are broke, really effing broke — so I was lucky to get a spot in one. It happened to be Thanksgiving, which felt like an extra blessing, as I’d been fearing the holiday all alone. I was overwhelmed with the sensory environment, being around people, and my usual symptoms; so I mostly just listened as they talked.
Some shared their relief for a night off the streets, talked about how rough it can be. Many had been in-and-out of homelessness since childhood, so this was a pretty normal experience for them. I thought about my experiences of financial struggle growing up, which weren’t even in the same league. Things were scary sometimes, and it did have a long-term effect on my mental health; but I always had a roof over my head, I always had nutritious food to eat.
It helped set a grateful tone for the experience, after all, at least I had a semi-functional 1993 Camry to sleep in — providing shelter, storage, some privacy. Many of these (kind, funny, truly alive) women didn’t even have that. Plus, coming from a community where people were generally having an easier time financially; I had people helping me along, helping ensure I wasn’t literally sleeping on the street.
But, the attitude of gratitude can only go so far — it was still the hardest seven months of my life.
My days were spent trying to improve things, often working until the array of bodily symptoms and mental fatigue would start to make me cry. I didn’t have an unlimited internet plan on my phone, so most of my time at night was spent lying down in the back seat of my car using meditation and visualization to take myself to a more peaceful place.
Of course, many other nights it was just crying, feeling terrified, and wondering how I’d ever get out of that mess.
I’d eventually pull myself out of homelessness when the symptom relief of warmer weather coincided with a referral for a job working for someone who was incredibly understanding about the accommodations I needed, which wound up leading to regular writing work.
And in the summer of 2019, nearly four years after I originally applied for disability payments; I was awarded about two of those years, anyways — allowing me to repay loans that helped me survive, get a working vehicle, and finally move to a place that’s a bit more compatible with my extensive sensory needs.
I’m still disabled and life still has its challenges, but even 2020 had nothing on living in my semi-functional car whilst broke and horribly ill.
It’s been almost three years since it ended, but I’m just starting to feel like I’ve moved on.
It was both traumatic and eye-opening.
It changed me.
It changed me in negative ways, like increased C-PTSD symptoms; but it also changed my view of the world, my level of consciousness in regard to what really happens in our society, and my perception of what I can handle, what I can overcome. (Plus a real random one, just ‘cause life’s lessons can be like that.)
5 Lessons from My Homelessness Experience
- I’m a bit of a badass. When you have an invisible disability, people are constantly questioning the authenticity of your condition, as if they’re thinking, “It can’t really be that bad.” (Without the #spoonie community all the gaslighting may have driven me off the edge.) It’d gotten to me, just as all the years of strife before had gotten to me. I felt meek.
Then, while homeless, I fell and shattered my foot, but walked on it for 10 days because it hurt less than the rest of my body — so I figured I was fine.
That’s f**king fierce. (Fibro fighters and autistics are fierce in general, and society has no clue.) And I stayed pretty darn positive too, I remember a drug store employee commenting on how I was smiling despite needing crutches and thinking, “You have no idea what else I’m smiling through right now.”
- There are heroes and helpers everywhere. There were so many times I hit obstacles that seemed completely insurmountable, but people continuously helped me out.
My home/car died repeatedly and a few people fixed it for cheap, one even doing it for free; and when I lost the apartment, friends, acquaintances, strangers donated enough to get the $500 car itself, then helped keep me in gas and internet-giving coffee purchases, as well as connecting me with creative work and donating occasional hotel stays that helped revive my spirit and get a good night’s sleep.
Despite being so far away from the people who care about me, despite it being a physically solo journey — I didn’t go through it alone. As the woman who created the great Fred Rogers would say, when faced with scary things, “Look for the helpers. You will always find people who are helping.”
- But people who leave piss on public toilet seats are the scum of the earth. That’s it, that’s the lesson.
- There are two Americas. And, even though it was still really effing hard, I’d been living in the comparably easy one. When you’re living in the easy one, things can “seem fine” for folks, but this is a result of the other America being overlooked, ignored, and full-on lied about. If you’re still in the easy one, please try to learn from advocates what it’s really like for people in poverty, and please call others out when they say disparaging things about those who need help.
- There aren’t safety nets, not really. I thought there’d be some kind of program to help disabled homeless folks find stability, someone who could help me find an adjusted place in our society. But the homeless center heralded as best resource in LA county was more like a massive mostly-empty waiting room outside of mostly-empty offices that offered pretty normal apartment listings, and a communal shower. I couldn’t even get mail there.
I appreciated the showers, don’t get me wrong, and the humans there were wonderful; but the way “our federal safety nets” had been described to me all my life, I thought, you know, there was something to catch us when we fell. It’s not true. Our programs are archaic, under-funded, and frankly seem to be on the verge of collapse.
If something happens to you and you proverbially fall, even if it’s not your fault, odds are that the government — whom you’ve given 30% of your life’s income to — will not be there to catch you. That is a toxic societal myth, and retelling it has very dire consequences for our most vulnerable people.
Sending you good vibes in dealing with whatever scary thing life’s sent your way, may we all find and be the helpers in this world.
People don’t mean to push us down, but it happens every day.
In our society, with its multitude of toxic norms, people often hurt one another without even realizing it — an unfortunate fact that likely applies to everyone, and one that is a result of something called social conditioning.
Society trains us how to act, teaches us how to “fit in,” the things we need to do, and the ways we need to be to succeed.
Some of these things are helpful. Good manners are lovely: I like that it’s customary to say “please,” that we should apologize if we’ve hurt someone, I dig that it’s considered rude to invade personal space, etc.
Basically, I’m into all the ones that are about caring and safety.
But then there are the other ones…
The norms that wind up hurting people — perhaps especially autistic people — are often the ones that aren’t taught, or even really talked about; the norms that aren’t kind, but are also socially acceptable.
People don’t get called out for these behaviors. People certainly get hurt, but there are no repercussions for doing the hurting.
For example, gender norms are undergoing reconstruction, at last, due to high toxicity: women are, at large, no longer tolerating the unwanted sexual attention put upon us for centuries, men are increasingly less expected to just repress their emotions (thank goodness), and those who don’t identify with either category are finally starting to get their stories heard.
This evolution of our norms is a result of the original toxic expectations that were put upon us — and we’re nowhere near done, there’s still toxic norms all over the place.
The conditioning that creates these norms happens from the very beginning, with our parents teaching us the things they were taught; then it amps up when the socialization of school begins, and gets really serious once we’re learning not to “rock the boat” at work.
Serious harm is very often done in ways that are completely socially acceptable.
We Autistics don’t comprehend much of this conditioning, so we’re disadvantaged due to frequently misinterpreting these norms, thereby not knowing what’s expected of us; then further disadvantaged because adhering to these standards is extremely difficult due to having a different neurotype, so being quite different at large.
While I had a few plain ol’ bullies, most of my adverse social experiences happened casually and persistently, even with people who I know to be generally kind.
I’m not talking about our social evils here, but our social blindspots; “normal” modes of behavior people don’t seem to realize are harmful.
This kind of socially accepted behavior is usually othering, and/or discourages Autistic people from speaking up about our needs, teaching us instead to disregard them in order to blend in — which has consequences. Dire ones.
Fortunately, we each have the power to start changing the toxic norms we find ourselves surrounded by.
We just need to care enough to try and change.
I’m suggesting that the following changes apply to our social norms at large, not just to people who’ve disclosed that they are Autistic.
Of course, we need to address many harmful social norms in our society; but I’ve gathered a handful of tips relating to Autistic folks.
Before you dive in, it’s crucial to know that since there’s such stigma and misunderstanding around Autism, especially in adults, many of us aren’t open about it; working very hard to mask these differences (which, btw, creates other issues).
You cannot tell if someone’s Autistic or not by appearances, especially in adults.
So, while the explanations are going to be in relation to Autism, I’m suggesting that the following changes apply to everyone in our society — not just to people who’ve disclosed they’re Autistic.
Also, since it’s can be hard to articulate these things, and because internalized ableism is most definitely a thing, I recommend my fellow Autists also watch for these unconscious behaviors in ourselves.
Finally, I believe that everyone in society would benefit from these shifts in behavior, that they can help us all better support one another.
I hope you’ll consider them. (TW: #5 has a suicide statistic.)
Help Autistics by Tossing Out These 6 Toxic Norms
- Pointing out “weirdness.” Even when a comment about my weirdness (or its many synonyms) is potentially meant as a compliment, it’s usually triggering — like so many Auties, it’s just been used negatively and resulted in my being isolated far too many times. When admiring how someone’s doing something different, something like “I like your style,” or getting specific about why their different approach is notable is probably a safer bet.
- Telling people what they need instead of asking. When Autistic people draw boundaries to protect ourselves, or otherwise go about things differently; people very often push back, suggesting we do it their way instead. This pressure can lead to meltdowns, shutdowns, and Autistic burnout — all things known to completely disable us. Our needs need to be taken seriously, and since we are the ones that can feel our bodies…we are the ones who know what they are.
- Judging others based on how things “seem.” We all know that looks can be deceiving, that we shouldn’t judge books by covers, and that there’s more than meets the eye — and yet, people so often think they can quickly size someone up, judging their character and competence based on how things “seem.” Things will seem a jillion different ways based on our own experiences, personality, and…neurotype. At large, coming to a quick conclusion about people is not a wise way to facilitate an accurate understanding of other human beings.
But in the case of autistic people, this huge societal problem can become straight-up dangerous. Being misjudged can lead to our lack of employment, housing issues, and isolation, which are all stressors that make our brain functionality decrease. So, before you assume someone isn’t a great fit for a job/home/friend because they “seem slow,” or strike you as “goofy,” or look a bit disheveled, etc. — give them a chance. In our society, far too much importance is put on “seeming together,” and it’s not helping anyone.
- Writing someone off because you “just don’t understand them.” People are all different, and some people will take longer to understand — especially when they‘re of a different neurotype. It’s not fair to just disregard someone because you don’t intuitively get them; as a society, we write people off way too fast, and often for harmless things. This happens a lot to many Autistic people, leaving us with the feeling of, “What did I even do wrong??”
Sometimes a good conversation will clarify everything, but people usually don’t bother. When I was diagnosed, I asked the therapist if neurotypical people might have an easier time connecting with me now that I’m able to explain my differences. She responded by gently managing my expectations, saying, “Honestly, probably not. Most feel like it’s too much work.” But why are we expected to do all of the work?? (Questions asked with kindness are always the first step towards understanding.)
- Ignoring (or laughing at) someone’s struggle because it’s “too different.” This is heavy, but it needs to be known: isolation is a top reason the rate of suicidal ideation in Autistic people is a terrifying 72%. Serious emotional harm is often done in completely socially acceptable ways, like no longer communicating with someone who’s going through something very different, and/or difficult — and people in our society are big on that.
It can be hard to reach out when someone’s struggling, sometimes it brings up our own fears and issues; I’ve been there and done the wrong thing because I was scared. But it wasn’t okay. As a whole, we like “happy and normal,” and try to ignore the rest, or even mock it. Hard times are often faced alone in this society, regardless of neurotype. It‘s messed up and we can do better.
- Suggesting people are “just _____,” when they’re struggling. When someone’s having a hard time and it’s suggested that a condition may be the reason, people often say things like, “they’re not Autistic, they’re just crazy.” (This is something that applies to chronic illnesses as well, i.e. “they don’t have chronic fatigue, they’re just lazy.”) When someone in our life is having a struggle that we don’t understand, we need to ask *them* questions to better understand their experience; and to do so whilst giving the honest benefit of the doubt.
So, if we could start cutting out these behaviors in ourselves, and speaking up when they’re coming from others, it’d sure help!
I know a lot is going on right now, with many different communities asking for change; and even when the changes are wanted, warranted, and we’re on board — changes in what’s normal can still be hard.
But since the reward is a kinder society with improved mental health, making the effort is so f**king worth it.
Awareness efforts very often do more harm than good to the autistic community. Listen to us, not people talking *about* us.
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!)
Everyone knows autism is a thing now. It’s been aware’d.
The problem is groups like Autism Speaks haven’t made people aware of what autism *actually* is, instead having the effect of “BEWARE of autism” — that organization even put out a commercial about how autistic children destroy their parents’ lives.
We don’t need a warning. We are not threats.
We are human fucking beings.
We need people to know we have different needs and when people push them it can have dire neurological consequences.
We need people to know that problems with executive functioning don’t mean that we’re stupid, it just means you need to give us a second.
We need people to know that if they’ve met one autistic person, they’ve met ONE autistic person. (The spectrum is already colorful, #colorthespectrum peeps, the problem is that no one is interested in all of the different hues!!)
We need people to know that “curing” us would mean that we’re no longer born.
Autism is a neurotype. A type of brain.
The only thing that could “cure” it would be on the lines of eugenics or genocide.
I’d love for there to be more research done on ways to prevent meltdowns, tamper sensory issues, and other tricky aspects of the neurotype — but sorting all that out would not “cure” us.
We’ll always be different.
We’d still approach things differently, also referred to as “thinking outside the box.” We’d still speak directly, which can be very useful in a society where facts have become debatable! We’d still miss things that seem obvious to NTs, and still notice things that they/you do not.
Diversity is an evolutionary strength in nature, and human beings are no exception to this rule.
Please help us rock our differentness, please help us to thrive so that we may better contribute to society.
Read the stuff we write, watch the videos we make, and otherwise engage with the #actuallyautistic population.
(We’re here! We’re chatting away, even if it takes a keyboard!)
It is not okay to listen to people claiming to speak for us. It is dangerous.
This. Is. Important.
To those promoting harmful NT ideas of “awareness,” please, please for the love of freakin’ god, use your voices and platforms to shed light our community itself, people who are #actuallyautistic.
Please stop hurting us with this puzzle piece bullshit.
It’s already hard enough.