The first newsletter from my Substack newsletter, Halcyon Tidings — subcribers welcome! * See end for source of subject/title quote! 🎬🍿 * Hey there, Welcome to Halcyon Tidings, a bi-weekly dose of real but uplifting… More
Societal Conditioning is Losing Its Grip, Let’s Help
Advocacy movements are changing harmful norms, but they can’t do it alone.
Social conditioning is a lot like air, we hardly notice it, and yet it affects every aspect of our lives.
It’s defined as ‘the sociological process of training individuals in a society to respond in a manner generally approved by the society in general and peer groups within society,’ and it looks like going to school, interacting with peers (especially “fitting in”), engaging with pop culture, adapting to work environments, etc.
These things shape the way we view the world and interact with others.
And right now, Americans are learning that our “air” has some fiercely toxic issues.
Though there have always been Black advocates speaking up, nearly a decade ago The Black Lives Matter movement finally brought national attention to the fact that we most definitely do not live in a post-racial society (which has been clearly reflected in demographic statistics for decades) — and yet our public schools essentially teach that the ’60s brought equality to our country.
Generations were taught that we’re “a nation that doesn’t see race,” learning that ignoring our racial differences was helpful; and this conditioning has led to continued societal disbelief and inaction in regard to the very real racial disparities in the US. It’s horrifying.
Then the #MeToo movement busted onto the scene in 2017, exposing the harmful misogynistic norms that women have been dealing with in America all along — and making a lot of us pretty furious about all the “sugar + spice” conditioning that basically trained us to put up with harassment and abuse, all in the subconscious pursuit of trying to be the “good girls” society told us to be.
And though disability advocacy movements haven’t yet caught the nation’s attention, we’ve been yelling for a very long time. From extensive issues with accessibility (for wheelchair users and beyond), massively-funded nonprofits that actually work against us (*ahem, Autism Speaks*), to a society rampant with inspiration porn in place of actually informing people about how to work with our different needs; to excessive government focus on “preventable illness” and little-to-none on the myriad of conditions that can’t be, resulting in a blame-the-patient culture that’s really hard to survive —we’ve got a lot to be upset about.
All-in-all, America has a white-supremacist, sexist, ableist (+!) set of social norms; and they need to change, fast.
While developments like oodles of (brilliant) intersectional entertainment, advocacy movements regularly trending on Twitter, and increased diversity in politics are helpful and encouraging; we also need our societal conditioning to change in a structural way, in our government and healthcare systems, schools, workplaces, and how media is sourced and distributed.
Luckily, the evolution of societal norms is often a direct result of individuals speaking up. A paradigm shift is not only possible, it’s already happening.
For example, those same public schools teach young minds that Thanksgiving commemorates a peaceful celebration of unity between settlers and Native Americans when history shows that the opposite was true. And this propaganda is taught by teachers who are overwhelmingly white, with a lived racial experience that 4 in 10 Americans cannot relate to.
We need schools that teach actual, factual, history, and it needs to be taught by teachers who represent the demographics of the students in this country.
Now let’s pick on the media. Television and magazines propagate impossible ideals, corporate support/dependence, and harmful norms that serve to protect the status quo — which isn’t surprising since six white-male-led companies control the vast majority of the media, often resulting in news coverage and bias that benefits those already on top.
The “normal” office space is also rife with room for improvement. The constraints of “acting professional” usually have more to do with not causing waves than treating colleagues with respect — and this conditioning serves us in the exact same way as the “sugar + spice” bullshite, helping to maintain the toxic status quo through unspoken demands like code-switching.
The effect of our present societal conditioning is that people are expected to “fit in” in order to move up in life, which is functionally racist, sexist, and ableist in application — ensuring that the people on top, stay on top.
(And we’ve only talked about 3 offensive –ists harming our society! There’s plenty more.)
How to Help
Norms are changing on our screens, now it’s time to securely bring inclusive changes into the schools, offices, and community spaces of the United States.
It’s time to check ourselves. And it’s time to speak up against harmful norms.
Luckily, the evolution of societal norms is often a direct result of individuals speaking up. A paradigm shift is not only possible, it’s already happening.
But it needs all of us.
Here are 6 ways we can help detoxify the effects of societal conditioning:
- Learn, learn, learn. We need to educate ourselves in areas where we have societally-suggested knowledge gaps (or even misinformation), carefully ensuring that what we’re reading was written by a member of the affected group. This can take some effort, but it’s worth it to ensure that what we’re reading is truly the perspective of the community affected. (There are lots of advocacy personal essays on Medium, so you’re at a great place to start.)
- Inspect our language. Our culture is rife with popular terms that are actually offensive to our many vulnerable demographics, and even well-meaning can people offend. (We’re practically trained to, via societal osmosis.) And it’s important to pay attention to aspects that aren’t usually considered; such as more subtle aspects of discrimination (ex. for ableism, hurtful usage of words like ‘crazy’ and ‘stupid’), phrases like “that’s just the system” that subtly stand up for the status quo. And it should go without saying, but this applies to every space — not just those where minority groups are present.
- Request change from the leaders of our society, especially politicians and corporations. Be it an email to your local political representatives about the harm of letting misinformation masquerade as news, no longer supporting an offending corporation due to sexist advertising, or calling out a celebrity for the societal ramifications of an ableist action; individual complaints add up and are often (eventually) appeased.
- Request change in your environments. Again, individual input matters! When enough of us ask for changes in respect to well, respect, leaders have to respond. And there are now training programs to help educate employees, students, and communities on how to better accommodate one another, so why not encourage one?
- Speak up when you’re affected. We need to speak up when we’re hit by the negative outcomes created by societal conditioning, or it will seem like “we’re fine with it.” If a teacher only calls on the white kids, if women in your office are paid less than men, if you’re being treated as if your disabled needs are irrelevant, or anything else of that nature — now’s the time to speak up.
- Learn to welcome the different. Even when we try not to let it, subtle-yet-constant conditioning affects how all of us see the world, often creating anxiety around allowing new experiences and people in. But in addition to being the inherently more kind thing to do, diversity has proven benefits; the more perspectives, the more coherent the collective understanding will be.
Inclusivity, attentiveness, and compassion in regards to our differences need to replace the societally-pervasive dinosaur mentality of “that’s just how things are done.”
And it starts with us.
Autistic people don’t need shock aversives, we need vocal allies.
The government has one more chance to stop the torture this year — but they need pressuring, NOW.
There is a cruel practice happening to autistic and otherwise disabled humans in Massachusetts that the UN has very literally deemed torture, attempting to use painful electric shock devices in order to control their behavior. This week, Congress can stop this inhumane treatment by essentially re-including a ban in the end-of-year omnibus bill — but we need allies to put the pressure on them, now. There is no excuse for this kind of treatment, but theirs is claiming to prevent aggressive and/or self-injurious behavior, which has been found factually inaccurate and just makes no damn sense in the first place. Here’s the full scoop:
Being autistic means a lot of things. (A whole spectrum even.) But one thing that most autists have in common is that our differently-wired brains can get overwhelmed by stimuli typical brains handle just fine. It’s intensely unpleasant — for me, it’s akin to being strapped too-tightly to a rickety rollercoaster I really don’t want to be on while a bomb continuously explodes in my brain — so when that neurological overwhelm happens, there’s naturally a breaking point.
How that breaking point manifests will look different in different autists, but for some of us that overwhelm can lead to aggressive and/or self-injurious behavior. I am one.
After decades of dealing with sporadic but uncontrollable episodes, I’ve devised ways to help avoid them: now when I feel that warning of an oncoming meltdown (which, for me, used to usually end in self-harm) I know I need to get away from any surrounding people with as little interaction as possible, make the lighting soothing, take meds, put on lofi hip hop, get some therapy dog love, call my safe people, cry it out, and floor = good. If I still feel that overwhelming urge to tear at my skin, I try to discharge and interrupt the painfully overwhelming energy by scratching the side of my rough couch (it can take it), and/or screaming into pillows.
Why am I telling you all of this? Because something that sure fucking isn’t listed is someone remotely shocking my body without my consent. But that’s exactly what’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts, where they claim to prevent unwanted behaviors like the aforementioned self-harm in people with ‘developmental disabilities, emotional disorders, and autistic-like behaviors’ by essentially creating the harm themselves.
They use an extreme form of aversive therapy via a device called Graduated Electronic Decelerator (GED), which sends strong electric shocks throughout their bodies when they exhibit unwanted behavior — like autistic meltdowns, and the overwhelm behaviors that precede them. To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4, a type of Electric Stimulation Device (ESD) that isn’t approved by the FDA, shocks patients at 90 mA: nine times higher than a cattle prod (10 mA), and a whopping 22.5 times stronger than an electric fence (4 mA). In 2013, the UN Special Rapporteur on Torture condemned the practice, saying it “violates the UN Convention Against Torture and other international standards.”
It’s been very officially, internationally, declared torture — yet it still continues in the United States. The fight to get these kinds of devices banned in the US has been going on for decades (known online as #StopTheShock), but so far lawmakers haven’t made it happen.
In recent developments, the FDA tried to ban ESDs at large in 2020 stating, “FDA has determined that these devices present an unreasonable and substantial risk of illness or injury,” specifying, “ESDs present a number of psychological risks including depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness; and the devices present the physical risks of pain, skin burns, and tissue damage,” also stating, “ESDs have been associated with additional risks such as suicidality, chronic stress, acute stress disorder, neuropathy, withdrawal, nightmares, flashbacks of panic and rage, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and injuries from falling.” (So…decidedly not preventing harm.)
And guess what? Taxpayers are paying for all this increased danger and harm, and it’s not cheap; according to tax documents, in 2020 the Judge Rotenberg Center was paid $84,108,326 in grants and funding by our government. That’s money that’s not going towards actually figuring out how to better help autists successfully find our place in society, and we’re really struggling.
ASAN is asking autistic and disability allies to call your members of Congresss and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Again, the only defense the Judge Rotenberg Center (JRC) has for being the only place still using these inhumane devices is claiming the GED (a type of ESD) helps prevent aforedescribed self-injurious-behavior (SIB) as well as aggression (AG) and that they have the most difficult cases in that regard. However, the FDA’s 2020 inspection found otherwise, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.”
It makes no sense. They have no excuse.
You’d think that’d be it, medieval torture treatment over, but not in our legal system. Efforts by JRC lobbyists resulted in the ban getting struck down on technical grounds in July of 2021, with new disheartening developments this fall. On September 28th, The Autistic Self Advocacy Network (a valued resource in the autist community), reported, “The bipartisan effort to #StopTheShock was included in the House version of the FDASLA Act, and was added to the Senate bill following a committee hearing. But yesterday, Congressional leadership announced that the final bill would be a ‘clean’ bill that drops many important provisions, including the ban.”
Fortunately, there’s another chance, this month: the end-of-the-year omnibus bill. And you can help.
ASAN is asking autistic and disability allies to call your members of Congress and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.
Please call as soon as possible and once you’ve engaged, please encourage others to do so as well by sharing advocacy info using #StopTheShock. I’ve truly only touched on the harms caused by the Judge Rotenberg Center. It‘s terrifying that this is legal in my country and horrific that they continue to stay in business (let alone receive millions in government funding). They need to be completely shut down, it’s criminal that it hasn’t happened already, but the very least the government can do is re-include the ban on the use of electric shock for behavior modification in the omnibus bill.
Autistic people don’t need shock aversives, we need vocal allies. Thank you for supporting us by calling your congress members today to demand that these devices are banned.
Brené Brown’s 6 ‘Empathy Misses’ + Why They’re Important
Disability has taught me a whole lot about these not-comforting-yet-still-ubiquitous moves.
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.
Autistic Adults and Autistic Parents Need To Come Together
There’s a knowledge gap, and it needs to be filled.
There’s a divide of understanding within the autistic community, one that can get quite contentious online: autistic adults and parents of autistic children. I think a root of the problem is society telling parents they’re responsible for raising kids in a manner conducive to doing things in neurotypical ways, the “normal” way, and parents at large face a lot of homogenized expectations and judgment for noncompliance.
But when a child has different neurological wiring, a different neurotype, normal expectations and activities can actually overwhelm their nervous system, making it even more difficult to do things like process language and verbalize. And autists are expected just act like we’re not experiencing this kind of agitating or even painful neurological overwhelm when we are, something that leads to all kinds of trouble, like autistic meltdowns, which are terrifying. During meltdowns, sometimes it truly feels like my brain is going to catch on fire from all the misfiring and pressure, then finally just explode.
They. HURT. And we don’t choose them. And we don’t get to decide when they end.
These kinds of internal autistic experiences have been treated as if they’re irrelevant, as if autists just have behavioral issues and need to learn how to “act normal,” something that makes us even more vulnerable, and we’re already unnecessarily dying decades before our peers.
Bridging the knowledge gaps between us and allistic (not-autistic) folks needs to happen and it won’t without help from parents of autistic children — the hard truth is that you’re the ones society listens to, not us, and we’re dying from the societal apathy. We need parent allies to really listen and to help our voices be heard.
Here are 10 takes on this gap from other autistic adults, starting with a couple of autists who are also parents of autistic kiddos:
- “I fall into both of these categories. I wish that there was more understanding of the different communication styles rather than people jumping down each other’s throats all of the time. I wish that functioning labels would be done away with and that the parents would stop speaking for us and listen to us instead.” A.M.
- “I am autistic and so are my children. I’d like parents of autistics to understand that they need to pay attention to what is going on and how their child is interpreting the experiences around them. As much as they can at least. They can’t understand truly but they can watch out for say, how a child might be handling someone having a crush on them or trying to interact with them in some intimate way.
And then they need to not approach their autistic kid with morals and judgments the kid may very well not understand. I was raised in the church and things just never made sense, yet when my parents would address whatever the issue was, they’d do it through the filter of something that already didn’t logically make sense to me. Your kid won’t understand what you want or mean if you aren’t speaking a language they understand. They may have to set aside what they think they ‘know’ and approach things differently, potentially without some things (like religion) being the primary measuring stick of a moral code.” S.L.
- “That when they talk bad about my autism, they are talking bad about me personally, because I don’t see myself as separate from my autism.” A.F.
- “That [autistic adults] often do really understand what it’s like to be an autistic child and we can help them if they listen to us. We can provide insight from an autistic perspective that they may not even consider as a possibility. Yes, parents often do know best, but when your child has a different neurology than you, why not ask the people who share that neurology for help? After all, we want what’s absolutely best for our future neuro-kin generation and will fiercely do whatever it takes to protect them. […]
Saying things like “my child is more severe than you are” or “you can’t speak for my child because you’re not the same” isn’t helpful. We understand their experience even if it’s not the same as ours. And if you’re saying that me (a mostly speaking autistic person) isn’t the same as your nonspeaking autistic, you’re right. I don’t know that experience because I grew up speaking using my mouth words. But then why not connect with other nonspeaking autistics who do know and understand your child from that perspective? There’s so many types of autistic people in the world; you’re bound to find one that has a similar experience to your child.” M.S.
- “They are not the ones with autism and that they have to help that person develop a system/ anything to move through life. I just feel like I was told how to feel most of my life and now I’m on my own idk how to process my actual feelings now that there’s ppl who want to listen. 🤷🏽♀️🤷🏽♀️” K.N
- “Understanding that we aren’t doing ‘bad things’ for the sake of being malicious 99% of the time. I remember having meltdowns and being told I was ‘ungrateful’ and throwing a ‘tantrum’ when the reality was it was like something else had taken over me and turned me into an anger monster. I was never in control until I came down from it and I was blamed for ruining outings and embarrassing my parents. Same thing with not being able to or not wanting to do a task or go to an event. They took this as me being defiant. The reality is they never listened to what I was actually saying when I said no and instead framed me as a defiant child. Talking to your autistic kid on a more peer level will help you communicate better and they will tell you what they need. You just have to listen and learn your child’s language.” S.S.
- “That it’s often a journey to understand our own feelings and symptoms. We don’t always have the answers, but that doesn’t mean others should speak for us.” C.T.H.
- “What bugs me the most is the idea that something is ‘wrong’ with their child. This whole grieving how they expected their child to turn out or how they wanted their life to be or their kids life to be. Disabilities are not bad, don’t need to be fixed, your child doesn’t need you grieving the loss of the abled child you wanted. Secondly, stop exploiting them on social media to ‘help other parents’ or ‘spread awareness’. Thirdly, I wish they would realize that societal rules are completely made up. Your kid doesn’t need to speak, use fake pleasantries, have fun at amusement parks etc to be loved, respected, or to enjoy life.” C.H.
- “That everyone is different. I really wish that was emphasized more. There is no ‘stereotype’, everyone still has their own personality.” S.G.
- “That we aren’t unintelligent just because we can’t/don’t communicate the same way. I’ve noticed the same problem within the deaf/HoH community; if you can’t or don’t speak (or can’t speak well) people don’t take you seriously or assume you must not understand normal speech. I can understand you just fine even when I don’t know how to respond or am unable to.” B.N.
It’s Been Two Years Since My Autism Revelations
I’VE YET TO REACH THRIVING, BUT I’M SURE WORKING ON IT.
Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:
They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.
Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.
It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.
But the thing is, I don’t live in a society that’s allowed me to do so.
The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.
There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.
And don’t even think of wearing headphones. Those are anti-social.
But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.*
* These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.
Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.
The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.
Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.
But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.
The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.
I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.
I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.
In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.
But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.
I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.
Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.
I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.
It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.
In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.
Since then, not so much.
I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?
And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.
The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”
Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.
Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.
Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.
I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.
And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.
I’m broken, really broken. But I don’t wish to shatter.
Professional Communication Tips for NDs
A lil’ wisdom gained the hard way.
Professional communication isn’t a breeze for most people, but when it’s between a group of people who are neurotypical and you’re neurodivergent, the potential for misunderstandings and struggle get even trickier.
It can be really defeating to get through the doors that often hamper NDs and other spoonies from success — resume gaps, too many jobs, functionality limitations, etc. — just to have it all dissolve for reasons that leave you bewildered and crushed.
Entering a group of NT people who already know each other and have established professional dynamics is so overwhelmingly complicated to me, my goodness, but this post shares a few tips learned from trying to re-enter the world of professional teams after years of flying basically solo. I’m autistic and have ADHD (AuDHD), so that’s the ND perspective I’m offering — I welcome comments to add to the wisdom, from similarly wired folks as well as other neurotypes. We can’t have too much wisdom. (I also happened upon a great Twitter thread with similar aims, there’s highlights from it at the end.)
Our time and energy are precious, and wasting it on a bad professional fit, or losing a potentially good one due to miscommunication is fiercely disheartening. In hopes of someone else not learning the hard way, here are some tips on ways to avoid ill-suited situations and/or navigate the challenges of professional communication while neurodivergent.
6 Professional Communication Tips for NDs
- Know Your Needs and Limits. It’s important to be honest with ourselves about what our limits and needs are, I’m of the rosy-eyed persuasion, very prone to overestimating what I can take on sustainably health/functionality-wise. Positivity’s got a great rep, but taking on more than our systems can handle means burnout — which scarily increases disabling traits and steals access to ND perks, like autistic hyperfocus.
It’s often hard for people to admit their needs and limits, but when you’re atypical there are increased odds of pushback bc folks just don’t get it. And avoiding that potential social issue can make just pushing through the internal struggle incredibly alluring, especially if you’re desperately in need of an income, and/or insurance. However, learning the hard way can mean severe neurological punishment, so it’s important to really consider if your neurology is up to the challenge.
- Ask Interview Questions Accordingly. In addition to screening jobs before you apply, ask very specific questions during interviews to distinguish if it’s right for you. Questions pertaining to financial and health sustainability can be hard to ask, but it’s just as important for the potential employer to be honest about the actual demands and expectations of the job as it is for us to be about our limitations. Try to fight any people-pleasing urges, don’t just assume it will be fine, and make sure you have the information you need (as well as making sure you’ve presented your strengths and all that usual interview jazz).
- Masking: Ooooh, masking. I was adamantly against masking my ND traits when I first learned masking had a huge role in crushing my functionality, and while I’m still infuriated that it’s demanded of us — it really can help when navigating NT communication.
People can be judgy, and they can come to damning conclusions without even asking any questions. So, now I have a rule to never take a meeting without preparing to socially mask first, as I’ve found just taking twenty minutes on presentation (appearance) and getting in a “NT Communication Time” headspace has a positive effect on reactions and helps me people more effectively.
Howevvvver, I haven’t been masking right. Growing up, I learned how to seem likable to NTs, asking them lots of questions, being positive, agreeable, etc., but that really only works for first impressions. I wish I’d learned the important thing is to demonstrate competence and communicate effectively. (I blame the patriarchy.) Tips welcome.
- Just to Recap and Make Sure We’re On The Same Page: Take careful notes in meetings and always follow up afterward with takeaways/action confirmation emails. It’s good to have expectations in writing as NTs don’t always say what quite they mean, and autists tend to take things literally. Also, people often lie and/or omit relevant truths to their bosses to reroute blame. There’s a whole phrase for it in Office World, “throwing people under the bus.” So, yeah, document that ish.
- To Cc: or Not to Cc: If wondering if it’s okay to add an upper person/boss on email, use extreme caution. (Or maybe just don’t.) Hierarchical communication norms are a mysterious maze, full of traps that seem like common sense or courtesy. According to the Harvard Business Review, Cc’ing the boss makes co-workers trust you less, which can lead to all kinds of trouble.
- Don’t Avoid Group Channels: Office communication channels like Slack are daunting for me because group dynamics are overwhelming in any form (and there are already so many!), but also it can be hard to get the info I actually need among all the messages that aren’t related to what I’m doing — they can be very busy, messy, and excessively interruptive/distracting, or the opposite, so inactive that I don’t get the notification and miss something important. But there are often professional consequences for not having your voice present, so if there’s a next time I’ll be sure to figure out a process to make it work for me.
The day I wrote the original list for myself, the internet kindly confirmed that I’m not alone in my frustration and struggle — I happened to check Twitter right in time to catch the fabulous autist YouTuber Purple Ella start a thread asking for similar advice, here’s her post and some of my favorite answers:
@liam1408: Developed a reputation of being a technical expert, always offering an honest opinion and able to speak truth no matter to whom. But took years of learning how to cope with the politics that flew over my head, ended up ignoring it, which was the best approach.
@polymathical: I just focus on being true to myself and improving myself in the ways that are fulfilling for me. I hope to find more people that vibe with my authentic self this way. I won’t be successful in the way others are, but I will be fulfilled.
@BrandNewAutie: I think years of masking made me somewhat ok at all of that, with many gaffes of course! It’s the aftermath and long-term impacts of masking that became destructive for me. Now to an extent I can turn it on because I’m learning how and when to unmask. I hope that makes sense?
@level80: Well as a neurodivergent person, my answer is by choosing self-employed careers (been doing paid work now for around 28 years) where there is a very small percentage of work time is face to face social interaction and the rest (90%-99%) is just getting on with the job on my own.
@MarcelPotter9: Just be yourself and let your natural talents and skills shine. A good boss will want a balanced team with a good mix of people & this will enable your strengths to develop and shine. I get on so well with my boss now, I’m the only one who can tell her off! 🙂
@ADHD_Coach_UK: I cope by doing things I am passionate about, and being open about my neurotype. Set expectations from me and what can do to help me. In my young days I progresses thru sheer sweat and tears, but that only led to unrealised potential. Wish I knew back then!
A Halcyon Memory
In the summer of 2015, I went a workshop for entrepreneurs in hopes of starting my still-someday-goal of owning a community-oriented cafe. Here’s the article they wrote about it, and the video they created:
How Breathing + Cold Exposure Can Improve Your Life
The Wim Hof method activates the mighty endocannabinoid system, the body’s wellness regulator.
Meg HartleyNov 10 · 4 min read
This article was orignally published on ILLUMINATION, I very much appreciate claps (you can do 50!) and follows over @ Medium!
There are lots of bizarre-sounding health fads out there, and many of them aren’t as effective as they are attention-catching, but I can say from personal experience that the Wim Hof Method (WHM) is one that actually works.
It’s just breathing exercises plus cold exposure, but it’s been hailed for improving, or even curing, all kinds of health conditions, as well as improving general health and well-being — and there’s a science to back it up.
Here’s a list of benes: More energy, boost the immune system, anti-inflammatory, better sleep, increase sports performance, workout recovery, autoimmune disease relief, arthritis relief, post-treatment Lyme relief, COPD management, migraine relief, MS management, asthma management, lower blood pressure, improve metabolism, and relief from fibromyalgia symptoms.
I’m in it mostly for that last one: helping ease the hellacious pain that is fibromyalgia.
I can’t report that I’m totally healed, but after 3–4 months of doing their daily breathing + cold shower technique, my pain decreased immensely. I’m unable to do the cold shower portion in the winter due to bone pain, but just the breathing alone still keeps fibro pain below a 3, when it was 8’s and up prior winters. And in the warmer months when I can do the cold shower portion, I don’t even think about fibromyalgia! It’s been a godsend.
Though this exercise is great for anyone with a body, I especially recommend that my fellow fibro-fighters and spoonies of all kinds — including mental health warriors and the neurodiverse — keep reading, even if your condition wasn’t listed this could help.
The breathing exercise also just feels great, delivering pleasant tingling sensations throughout your body; it’s both invigorating and relaxing, plus my back and neck usually pop with ease afterward.
The reason the WHM is so effective is that it activates the endocannabinoid system (ECS) which is best known for being the bodily system that works with cannabis, but it’s so much more.
The ECS is in charge of regulating virtually all of the other systems in our body, so it’s big deal, and it’s criminal that doctors don’t study it in school. Science has shown that atypical endocannabinoid levels are associated with many chronic illnesses, several of which are listed above, as well as forms of neurodiversity — like Autism, ADHD, Tourette’s, and others.
In 2018 researchers studied the WHM on Wim Hof himself, finding increased activity in the areas of the brain that are “associated with brain mechanisms for the control of sensory pain and is thought to implement this control through the release of opioids and [endo]cannabinoids.”
In other words, the breathing exercises and the cold exposure cause an increase in ECS activity, allowing it to better regulate the body’s functions and get unbalanced aspects in check.
Again from the study, “The practice of the Wim Hof Method may lead to tonic changes in autonomous brain mechanisms, a speculation that has implications for managing medical conditions ranging from diseases of the immune system to more intriguingly psychiatric conditions such as mood and anxiety disorders.”
How to do the Wim Hof Method
Completing the WHM should take 15–20 minutes, all you need is this free video and a functional shower (or another form of cold exposure). The video will guide you through a 3-part breathing exercise, which will be repeated 3 times.
Here’s how it goes:
- The first element involves circular breathing, which is simply breathing into your belly, letting it extend, then pulling that breath into your chest, then releasing. The video will take you through 30 reps, showing you an orange bubble that inflates and deflates with you to help keep time.
- In the second bit, Hof will tell you to let all of your breath out and to refrain from breathing in for as long as you can. It’ll give you 60 seconds, then 1:25 as goals — but don’t feel pressured, just fast-forward the video when you need to breathe in, or pause if you can hold out longer.
- The third portion will have you do the opposite, breathing in as much as you can, then holding the air in for 15 seconds before releasing — if you haven’t felt the great bodily feelings yet, they’ll come for that part.
Then it’s time to hop in a freezing cold shower! It’s hard at first, but they became refreshing for me after a few weeks — you’ll adjust to the cold temperatures too, you really will. (Which expands options for outdoor swimming fun…)
In the meantime, if the cold water is just too cold, try starting it at normal temps and then moving to cold. Start out with whatever your body can handle, and work up to 2–3 minutes.
12 Tips from a Gorilla, Re: Global Calamity
He’s got some changes in mind.
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?
What about the world?
Autistic People Are Still Being Tortured in This U.S. Facility
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.