Autistic People Are Still Being Tortured in This U.S. Facility

Please join the #StopTheShock movement to help end the abuse.

Image by author, right-click to share at will (or make your own).

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.

When even Google Ads is calling you out…

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

Tweet preview/suggestion via author.

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.

Image by author, right-click to share at will (or make your own).

Here’s What Autism Looks Like


It’s about the inner.

Interest in (and acknowledgment of) the autistic adult community has gone up lately, which is wonderful. People at large are starting to understand that even though we’re different, we still have a lot to contribute; and autistic-led shows like Everything’s Gonna Be Okay are helping people to understand just how wide the spectrum can be.

But there’s still a lot of confusion in the allistic (not autistic) community about what autism “looks like,” usually in reference to how a person appears, but you really can’t tell if someone’s an Autist based on observation.

In addition to the truly infinite variety of ways autism presents, many of us have been taught to mask our traits; so knowing what’s happening inside the person, the reasons behind our behaviors, is essential to recognizing autism in someone.

Being autistic is about having different wiring, literally experiencing the world differently due to neurological differences; resulting in varied sensory perception, ways of relating to the world, and reacting to it differently.

A comic strip by Rebecca Burgess popularized a way to visualize this internal experience that’s been embraced by the autistic community. It explains that most people think that the autism spectrum is a linear thing — a spectrum from “not autistic” to “very autistic” — but it’s actually more like a color wheel of various autistic traits, with Autists affected more and less in different areas (as well as times in our life).

Here’s that one:

Image by Rebecca Burgess

vs.

Image by Rebecca Burgess

I later came across another very helpful expression of the concept, created by autism assessor, Matt Lowry, LPP. I particularly like the use of medical terminology and the way it succinctly elaborates on each section:

Image by Matt Lowry, LPP

Lowry’s information describes atypicality in the following areas (some info added for further understanding, but the list isn’t exhaustive):

Interoception: Internal senses (hunger, thirst, going to the bathroom), awareness of emotions, alexithymia.

Proprioception: Sensing body position, dancing, walking on toes, spinning, dyspraxia (clumsiness), motor control.

Exteroception: Sensing the outside world, hypersensitive, hyposensitive.

Stimming: Repetitive movements and sensory seeking for energy regulation.

SpIns: Special Interests, intense research, information hunger, collections.

Executive Functioning: Hyperfocus, demand avoidance, hygiene, autistic inertia (difficulty changing tasks), working memory, verbal problem-solving.

Relationships: Rejection sensitivity, masking, bonding through SpIns, misunderstandings.

Communication: Echolalia (repeating others’ words), palilalia (repeating own words), echopraxia (repeating others’ behavior/movements), scripting, eye contact, infodumps, body language, tangential conversation.

Emotional Intensity: Meltdowns (neurologically different than “tantrums”), shutdowns, situational mutism, hyporeactivity.

Note: These things also add up to big-time fatigue (mental and physical), and often mental health issues, like anxiety, depression, and C-PTSD.


I wanted a version that allowed me to mark my trait measures so I can better communicate my internal experience, so I sketched one out that clearly segments the areas — allowing me (or any autistic person) to mark how much atypicality is presently experienced in each trait segment:

Image by author

I originally made it for use with my therapist, but have also started tracking my trait levels for the purposes of both curiosity and managing problematic aspects. (I just got started, but already find it interesting that engaging in more stimming behavior — energy regulation — seems to be linked with experiencing less emotional intensity, which makes sense.)

For an autistic person to mark atypicality levels, right-click to save so it can be marked in a drawing program, or print it out and grab a marker. Consider the different aspects of each trait section and how atypical experience is at this time, then mark levels appropriately, like so:

Image by author

I also imagine it’ll be useful in other realms of life when needing to explain to others how and why something is causing atypical issues. (If you’d like to have it on an object to help explain differences and accommodation needs, like a work mug, click here.) I hope it’ll help my fellow Autists feel more understood and allistic folks better understand.

(Note: Images and article reviewed and approved by Rebecca Burgess and Matt Lowry.)

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

Photo via Instagram

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 Science

Photo by Mathew Schwartz on Unsplash

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 AutismADHDTourette’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

Photo by Tim Goedhart on Unsplash

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.

Happy Hoff’ing!

What is Autistic Burnout?

WHEN AN AUTISTIC BRAIN GETS PUSHED TOO FAR, IT PUSHES BACK.

Photo by Pawel Czerwinski on Unsplash

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.


A study published in Sage Journals this year further elaborates:

“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.

Yikes.

What Can Be Done to Prevent it?

Photo by Patrick Hendry on Unsplash

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.

 31 Things Autistic Adults Wish NTs Knew

We don’t need anyone to speak for us, we need people to LISTEN.

Photo by Franco Antonio Giovanella on Unsplash

Originally posted on Artfully Autistic, I very much appreciate claps (you can do 50!)
and follows over @ Medium! 

There are many requests for allyship right now, and while it can be overwhelming to learn about disadvantaged communities while also navigating a global pandemic — it’s also crucial, and really quite exciting.

We’ve finally gathered the courage to share and listen to each other’s stories on a bigger level, expressing ourselves and working to understand what it’s like to live in circumstances unfamiliar to our own, and it truly does have the power to change everything.

This article comes from the Autistic community, of which I am a proud member.

It’s hard to be Autistic in a Neurotypical world, as things literally are made for a different neurotype, a different kind of brain. Additionally, instead of in the place of desperately needed information — like how to work with us, communicate more effectively, and why we do the things we do — we’ve got hoards of misinformation, stereotypes, and presumptions.

We’ve got a lot to contribute, and we deserve to be included, especially when it comes to being accepted into the workforce. But we’re not. And it’s not okay.

Though there’s a big organization claiming to speak for us, they mostly just tell the public not to bully Autistic children, which does nothing for the millions of Autistic adults trying to create a life against daunting odds. We need people to understand what it’s actually like to be of Autistic neurology, what it’s like to be in a body run via Autistic wiring.

In an effort to bridge the knowledge gap, I went to a trusted source for all things Autistic: the online Autistic community (specifically private support groups), and they/we had a whole lot to say.

This issue is, of course, triggering to many of us, so please try to understand that some of the answers will reflect that emotional upset.

Thank you for listening. 🙏

What We Need You to Know

Autism (and Neurodiversity at large) is rep’d by the infinity symbol. (Photo by Reuben on Unsplash)

  1. “Autistic people are the experts on autism. Stop speaking over us.”
  2. “I wish folx knew what an act of courage and vulnerability sharing one’s diagnosis can be, and that chuckling or otherwise invalidating their diagnosis is never ok. Normalize trusting that people know themselves better than anyone else could.”
  3. “We don’t grow out of it.”
  4. “That our way of being, interacting, communicating, experiencing the world isn’t less than.”
  5. “It isn’t just on us to adapt to the norm to be accepted, to be seen and heard. It is just plain ableist to expect that of us. It is as much on you, the neurotypicals, the society at large to make the effort to understand us, as much as you feel that it is on us to understand you.”
  6. “I hate when people say ‘oh everyone is a little autistic’ no not every one is a ‘little autistic’. You either are or you aren’t. You can have a trait that autistic people have but no, you aren’t a little autistic.” — Siera Komarek
  7. “That we aren’t broken and don’t want to be ‘cured’” — Nina Stepalovitch
  8. “They don’t call it a disability because I can function normally. There really are things I simply can’t do. Like any issue, it becomes a disorder when it becomes a problem that interferes with your daily life.” — Hayley Hackett
  9. “Believe us when we say something about our experience? So many times I’ve said something ranging from ‘that’s too loud’ to even ‘I have a hard time understanding TV shows cause I’m faceblind and lose track of the characters’ and it seems like anything I ever say that doesn’t line up with their NT experience gets questioned and invalidated. Just accept that not everyone perceives stuff the same way you do.”
  10. “I’m not a child. I don’t need to be treated like one.”
  11. “I don’t miss most of what you might be thinking or feeling, it’s just that any given person could react differently to the same situation on different days depending on so many things, that I don’t want to presume to be able to read your mind.” — Brooke Northrop
  12. “I wish parents of autistic kids would realise that the best way to address behaviour is to focus on the needs their kids are struggling to express. Many of the autistic ‘problem behaviours’ that parents get concerned about are actually just ways autistic people act when extremely upset. (Often it’s the way ALL PEOPLE act when they’re upset.)
    .
    We just get triggered by different things. so you’re sitting there trying to figure out what puzzle piece will make us whole or whatever — when actually we just need you to turn off the extraction fan.” — Leyla
  13. “YT autism is not the default. Non YT Autistics need MORE support not less because the medical and societal establishment thinks YT and male and cis is standard when it just isn’t.”
  14. “Diagnosis is only one way to discover that you’re autistic, you don’t become autistic the moment a doctor tells you you are, and people who have been autistic their whole lives know better about autism than the doctors ‘diagnosing’ it.” — Basil Pepperomia
  15. “If someone tells you ‘This is really hard for me to cope with’ just believe them. Try to imagine something that is really hard for you to cope with — not how easy YOU would find it. […] If you can’t understand someone’s sensory struggles, social struggles, or processing issues that’s okay, but you need to accept that you don’t understand instead of assuming it doesn’t make sense or doesn’t exist.”
  16. “Masking unwanted autistic traits is painful, draining, literally bad for our brains, and it’s scientifically associated with autistic burnout (extreme problematic traits) — which is associated with suicidal behavior. We can’t just ‘act normal’ for you all the time.”
  17. “ABA is abuse. We do not need therapy, we need a more hospitable environment. Our sensory needs and cognitive processes are completely different.”
  18. “Communicate directly. Stop using so much nuance and relying on others to understand something you’re not effectively communicating. Understand that our brains work differently, this is not something that can be treated or cured as it’s not an illness or injury.”
  19. “Hoping someone will ‘take the hint’ Is unclear and ineffective communication.” — Tabitha Anne Shaw
  20. “I’m so tired of people not doing communication.” — Siera Komare
  21. “Not everyone can communicate verbally all the time.”
  22. “Autistic brains are a natural, beautiful part of human diversity. It’s not some tragedy or disease. I’m not upset that I’m autistic. When I ‘come out’ to you you don’t have to make me feel better about it by saying how ‘actually it’s fine’ and Greta Thunberg is autistic too. Yeah I already know.” — Leyla
  23. “Stop using the fucking R word, ever, for any reason.”
  24. “A lot of cringe culture is just autistic traits. [In regard to NT acceptance] words never meet with actions.”
  25. “Sometimes the music/tv is painfully loud and sometimes I can’t hear it very well, even if it’s at the same setting as before.”
  26. “The main thing I wish people understood is that autistic adults with low-support needs like myself still occasionally need help, and that doesn’t make us less capable. Sometimes I need a little more patience than a neurotypical person, or my autism just needs to be taken into consideration a bit.
    .
    For example, not scheduling me as one of two servers on a holiday weekend with no other support staff. A neurotypical can compartmentalize that stress. I had a terrible meltdown and then shutdown. But I can handle any other very busy day just fine, just that specific scenario was one I shouldn’t have been in.” — McKala Hanes, 23, she/they
  27. “You might see us stim, but ‘looking Autistic’ or ‘seeming Autistic’ isn’t a thing.”
  28. “I want them to understand that we need different ways to work. Just because you can work 40 hours a week and do well doesn’t mean I can do the same. It’s really tiring and we need better accommodations to work so we can actually survive.” — Gabby she/her/hers
  29. “Unless it’s actually hurting someone or disrupting something, don’t immediately scold someone you’re conversing with for being ‘too loud’ volume-wise. And if it is necessary, try asking before shaming. I have so many issues now with talking because I know I don’t always have awareness of my volume when I go off about something I’m interested in and that could be made so much easier if people were just kind.” — Tabitha Anne Shaw
  30. “Some days are better days than others. Support needs vary depending on the day and circumstances. Just because I look put together and am fairly articulate, doesn’t mean I can feed myself or keep the house clean.”
  31. “Eye contact and honesty are not related. Eye contact and listening are not related. Eye contact and taking something seriously are not related.”

For more information, please check out #ActuallyAutistic, #AskAnAutistic, and/or absorb other kinds of content (essays, books, videos, films/shows) created by people who are actually Autistic.

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.

Meg Hartley · 6 min read

Photo by Sarah Kilian on Unsplash

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

Photo by Josh Calabrese on Unsplash

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

Photo by Marc Kleen on Unsplash

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 #4The 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 #7I 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.
Photo by Andrew Thornebrooke on Unsplash

Autism Allies — We Need You, Now

A movement called #StopTheShock is in crucial need of public support.

Meg HartleyAug 10 · 3 min read

Photo by Matthew Waring on Unsplash

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.

In 2021.

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.

Sign the PetitionThe Judge Rotenberg Center (JRC) in Canton, Massachusetts is a “treatment center” that uses their own, non-FDA approved…www.change.org

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.

Sign the PetitionThe Judge Rotenberg Center (JRC) in Canton, Massachusetts is a “treatment center” that uses their own, non-FDA approved…www.change.org

7 Must-Know Autism Terms for Autists and Allies

A lil’ knowledge to help you be an effective self-advocate or ally

Meg HartleyJul 12 · 7 min read

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

Photo by Alexandra on Unsplash
  1. 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.
  2. 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.
  3. 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.)
  4. 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!
  5. Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definitionAutistic 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.
  6. 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.
  7. 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.)
Stimmmmmmmmy awesomeness. FYI: Enjoying staring at it doesn’t mean you’re ND! NTs stim too, usually in different ways, stress balls and pen-clicking, etc — but whatever calms the brain works, I would not be at all sad if NTs also carried around sparkly goop and such! It could even help normalize us. (Image via Giphy)

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.

Why I Stopped Trying to Be “Normal”

Normal is inherently othering, divisive, and reductive.

Photo by Dan Parlante on Unsplash

Originally published in the Medium publication, The Ascent. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)

The word “normal” comes up a lot in our society.

We use it as an aspiration, “I just want to be normal,” or as a judgment, “that’s…not normal,” it’s even used like it’s a synonym for healthy, “that’s perfectly normal.”

I believe that all three uses are problematic for many reasons; but primarily because these homogeneous expectations have a very toxic effect on our mental health.

I feel that this is true even for those who feel they’ve achieved this mysteriously lauded act of mediocrity, but it’s especially toxic if you’re born in a body that excludes you from this supposed normality.

During my school years, the adult world told me that I was one of those lucky people, that I was normal, and that this was definitely a good thing — that I’d do just fine in life because of it.

I always knew it wasn’t quite true, and certainly faced much teasing despite this supposed normality, especially early on, and I certainly struggled to adjust to adult life more than my peers — but at 37 years old, I learned that I’m even less normal than I realized.

Last summer, I was officially diagnosed with Level Two Autism.

Society convinces us that we need to be less of ourselves in order to make more of ourselves. This is just bonkers.

This curveball brought many feelings, many of which were good, especially through the initial process of self-diagnosis; learning all about how my particular neurotype works while finally connecting to a community of people who quite literally think like me. There’s been much self-acceptance and empowerment since the diagnosis, it’s hard to explain the lightness that has come from knowing the physiological reasons as to why I am the way I am.

But, unfortunately, those weren’t all of the emotions. It was also really hard to learn that I was not only not normal, but that having tried so hard to pretend like I was had helped send my body and mind into malfunction.

After my diagnosis, I was tormented with endless painful memories slicing through my consciousness, each even sharper through this new lens; often making the other people involved seem cruel. Sometimes it even made me give up on humanity at large because most of them weren’t even “bad people” they were f**king normal peopleIt 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.”

Photo by Samuel Regan-Asante on Unsplash

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

Photo by davisuko on Unsplash

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”

Photo by Bart LaRue on Unsplash

Let’s break it down, here’s 7 reasons to stop trying to be normal:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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?
  6. John F. Kennedy said it sucks. In his more dignified words: Conformity is the jailer of freedom and the enemy of growth.
  7. 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.

Photo by Kristina V on Unsplash

Why Many Autistics are Offended by Elon Musk’s Use of “Aspergers”

The term is no longer in the US’s diagnostic manual for very good reasons…which include Nazis.

(Image via People.)

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).

(Photo by Jon Tyson on Unsplash)

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.

Also, Nazis.

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

It’s disturbing to know what’s really going on here, but that’s the reason why we DO need to acknowledge it. (Image of Hans Asperger via Nature)

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.

P.S. Nikola Tesla is rolling over in his freakin’ grave for being associated with such a perpetrator of societal ills. (You big Edison!)