The Outdated Language of Autism ‘Awareness’ Month

Published on April 29, 2023 by megglesworthLeave a comment

A shift among advocates reflects the view that autism is simply another neurotype—not a disease to be cured.

BY MEG HARTLEY, for The Progressive
APRIL 28, 2023 2:54 PM

While Autism Awareness Month may have started with good intentions, every April my autism support groups are flooded with upset reactions to Autism Awareness posts. While these posts mean well, because society’s conditioned people to beware of autism, they usually come out infantilizing, condescending, or even dehumanizing, advocating for the end of autism…which they don’t seem to realize means the end of autistic people.

In the decades since 1970, when the Autism Society first established Autism Awareness Week (which then evolved into Month), we’ve learned a lot about being autistic, and it’s important that the language we use reflects this. The Autism Society recently shifted away from using the term “awareness” by renaming the event Autism Acceptance Month. Unfortunately, the public really hasn’t caught on.

This may not seem like a big deal, but for people who are autistic, language matters. Fifty years of promoting “Autism Awareness Month” creates “real barriers for Autistics to be seen as more than a stereotype,” writes researcher Maddy Dever in the Canadian Journal of Autism Equity. We should instead, she says, aim to move from “words and thoughts that cause exclusion and segregation to words that promote inclusion and accommodation. Changing our language changes the way we think, changing the way we think, changes the way we act, and our actions can bring about change that will allow Autistics to thrive.”

Autism is a descriptor for neurological differences that result in our experiencing and processing the world differently. These differences cause us to react, think, and behave in alternative ways. Autism is a neurotype—not a disease. But the “awareness” framework can make people think it is. When people advocate for “curing” autism, they’re actually rooting for “no more autistic people.” The conversation can quickly devolve into one about eradicating us, and that’s not okay.

There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”

An autistic life is worthy of living. Even if it did make physiological sense, I wouldn’t want to be cured of being autistic—I want to be cured of the things that cause autistic burnout and our terrifying suicide rates. There are many meaningful ways to integrate us into society, but first society has got to desist in trying to get us to “stop acting weird.”

When society has such homogenized expectations of “normal,” it results in people either being excluded or encouraged to hide their differentness. With autistic people, this behavior of “masking” can result in autistic burnout, leading to an increase in problems including extreme sensory sensitivities, communication troubles, meltdowns, and debilitating exhaustion—all of which, ironically, can result in the inability to mask or, for many, participate in society at all.

These are just some of the reasons why the autistic community advocates for an acceptance over awareness frame: it emphasizes accepting that we’re different, learning what autism really is, and letting us be us.

The switch from ‘awareness’ to ‘acceptance’ is part of a larger neurodiversity movement that views brain differences as not inherently lacking or wrong—just different. And beyond that, it’s part of the social model of disability, which “identifies systemic barriers, derogatory attitudes, and social exclusion, which make it difficult or impossible for disabled people to attain their valued functionings.” It’s time for society to make room for more of humanity, and switching to Autism Acceptance Month is a part of that.

Additionally, the current popular verbiage has other problematic aspects. Autism Awareness Month may have started out with intentions of truly helping autistic people, but it’s become the biggest income booster for the autism industrial complex—a litany of groups like Autism Speaks that claim to help autistic people, but are known in the community for doing the opposite.

There is another way: It’s time to actually listen to autistic people about what we need to better manage our easily-overwhelmed but also uniquely equipped brains.

Here are some tips to get you started on being a part of our societal transition to autism acceptance:

Know that different doesn’t mean worse. Don’t dismiss or judge people for needing sensory gear (headphones, tinted glasses, etc.), stimming (repeated movements, fidgeting, etc.), needing mobility assistance (cane, walker, etc.), requiring different ways of communicating (nonverbal, requiring text, etc.), or other differences people often incorrectly associate with lack of intellect or competence.

Take disability accommodations seriously. Similarly, when someone needs a disability accommodation, that doesn’t mean they “think they’re special,” it means they have different needs. The ADA may require employers to provide reasonable accommodation in the workplace, but in practice it’s much trickier, with pushback from bosses and rolled eyes from coworkers. It’s hard enough to have different needs, and it’s harder still to ask for accommodations, so for the love of god, don’t make it even worse—and call out anyone who does.

Don’t get offended when someone asks why. Some of us need to know why in order to do the best job we can. Autism acceptance advocate Callum Stephen summed it up impeccably: “One of the best things you can do for autistic people is explaining why. Why you want us to do a thing (X way); why something isn’t possible; why you’re upset with us; etc. We may not intuit the ‘why,’ and knowing helps us to contextualize and act with purpose and direction.”

Ask questions instead of assuming the worst. One of the biggest myths around autism is that we lack empathy, but to us it looks like non-autistic people often lack empathy. Autistic sociologist and autism researcher Damian Milton described this issue as the “double empathy problem,” which proposes that “the social and communication difficulties present in autistic people when socializing with non-autistic people are at least partly due to a lack of mutual understanding between autistic people and non-autistic people—i.e., most autistic people lack understanding of non-autistic people whereas most non-autistic people lack understanding of autistic people.” Autistic people are often inherently on different wavelengths, so to speak, so more communication is often needed to accomplish mutual understanding.

Don’t assume you know what autism “looks” like; that’s not a thing. While some of us move with tics like twitching or blinking, lots of us have been taught to mask, and may seem “normal” or different in a way that’s hard to put your finger on. As we say in the community, “If you’ve met one autistic person, you’ve met one autistic person.”

Speak up when you hear outdated language. Allies are crucial in helping change to really take root, there’s immense power in speaking up for individuals not given a sufficient voice in society—so, please, correct people who’re still saying “awareness” and fill them in on why the shift is needed.

Ask the government to adopt “acceptance” terminology. Make a public comment to the Interagency Autism Coordinating Committee and encourage them to revise the outdated and harmful “awareness” terminology and make Autism Acceptance Month official in the United States.

We need everyone to know they should not write us off. In addition to desperately needing understanding and support, we have a lot to contribute—and that’s exactly what acceptance will help us do.

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

Published on December 1, 2021December 27, 2022 by megglesworth1 Comment

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

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.

Here’s What Autism Looks Like

Published on November 15, 2021December 28, 2022 by megglesworthLeave a comment

It’s about the inner.

Dec 15, 2021

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:

vs.

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

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

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

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

Exteroception: Sensing the outside world, hypersensitive, hyposensitive.

Stimming: Repetitive movements and sensory seeking for energy regulation.

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

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:

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

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

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

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

7 Must-Know Autism Terms for Autists and Allies

Published on August 5, 2021December 28, 2022 by megglesworthLeave a comment

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

Meg Hartley Jul 12 · 7 min read

Photo by Gabriella Clare Marino on Unsplash

Originally posted on An Injustice, I appreciate claps (you can do 50!) and follows over @ Medium! ❤

For people who are Autistic, knowledge about our neurotype — how our brains work — is incredibly empowering; and for those who care about us Autists, knowledge is empathy.

The present public perception of Autism is based mostly on neurotypical (NT) observations of our behavior. Focus is on the social implications, with people often referring to how we “seem,” but the internal Autistic experience is far more crucial for people to understand.

We need people to understand how it *physically* feels to be Autistic. It’s the only way our society will learn to stop unwittingly harming us, and better learn to include us.

Since we live in a society that was literally designed for a different neurotype, a different kind of brain, we are persistently expected to do things in a way that works well for most people’s brains — but that very often conflict with our own cognitive processes.

It causes very real problems, even for those who can mask their Autistic traits.

For me personally, it feels like pressure in my brain during tasks or environmental stressors (light, sound, conversation). I was able to pretend it wasn’t happening for years, but eventually, that masking took a toll on my brain, and I started having unexpected outbursts; which eventually turned (back) into full-blown meltdowns and body-wide physical pain.

In addition to the horror of the meltdown itself, which can last hours and involve self-harm, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also potential consequences for actions during the meltdown, as well as shame.

And in addition to adapting to NT processes, we have to constantly observe and adjust our behavior to the NT norms. It’s just too much.

Additionally, since Autistic representation in the media is very narrow and often misleading; people at large have no idea what it feels like to be of Autistic wiring, making it even harder for us to explain, especially given that so many of us struggle with efficient verbal communication and executive functioning difficulties.

Too much of the onus is put on us, and far too little on those whose neurology isn’t struggling with the task at hand. We need to be met halfway. (Desperately.)

I hope defining these terms in language that aims to explain how these experiences physically feel will help both Autists in better articulating their own experiences—dealing with neurological malfunction is confusing, to say the least! — as well as helping NT allies better put themselves in our shoes.

Of course, I can only describe how my experiences feel, the adage of “if you’ve met one Autistic person, you’ve met ONE Autistic person” always applies.

Knowledge really is the beginning of all empathy, it can create a bridge between people who have a chasm of differing life experiences. One person speaking up in an otherwise indifferent room can make all the difference.

7 Must-Know Autism Terms for Autists and Allies

Executive Malfunction: This term refers to our struggles with planning, remembering information, problem-solving, organization, and time management. This is one way to get that painful brain pressure I was talking about. For me, it generally happens whilst trying to use technology, verbalizing, remembering, filling out forms, doing finances, or when in Autistic burnout (see #5), freakin’ anythiiiiiiing. Ugh. It can be very problematic and can lead to expensive errors, dangerous meltdowns, and further loss of functionality — and yet, an executive malfunction does not indicate intelligence deficits, we’re just struggling to do things in a way that wasn’t designed for our different neurology.
Meltdowns: I’ve gathered that to the observer, Autistic meltdowns look like a “tantrum” or “freak out’’; but what’s happening is actually neurological overwhelm, often due to sensory overload. Despite how it looks, it is a very physical issue, not just emotional. *And they. Are. Terrifying.* For me, at first, it feels like a huge overflow of anxiety in my body, as if on a malfunctioning rollercoaster and desperately want off, but I’m trapped…then I just kinda, for lack of a better term, go berserker. I want to stop, to behave rationally, but I can’t. It’s awful, almost like watching myself from the outside.
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And in addition to the horror of the meltdown itself, which can last hours and involve self-harm/suicidal ideation, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also the potential consequences for actions during the meltdown, and crushing shame, which can lead to worse. So, when an Autistic person says they’re fending off a meltdown, it’s crucial to take our needs seriously, because this issue is a very big deal and, at large, very misunderstood by the Allistic, or not-Autistic, community — especially regarding Autistic adults.
Shutdown: These happen for the exact same reasons and need to be taken just as seriously as a meltdown, even though it may not seem as serious. An Autistic shutdown is the brain’s way of directing all that overwhelm inward instead of outwards, causing the person to become non-responsive. For me, these usually happen after a meltdown, like my brain is just…done. (I’ve heard them described as something experienced in place of meltdowns as well.)
Going Nonverbal: When this trait is severe, this is completely literal; some Autistic people are nonverbal their whole lives. For me, this feels like my brain’s built a steep mountain around itself for protection, and eeeking any communication out (even typed) feels, and often is, simply insurmountable. It’s usually just when I’m dealing with burnout, but can also happen for brief periods when I’m overwhelmed.
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For me, at the worst (*knocks on wood*) I can still mumble to myself, or my dog, but the words are likely to come out wrong and/or slurred and take immense effort to get out — which can lead others to very unfortunate conclusions, in addition to overexerting my already-taxed brain, which leads to further malfunction. So, via the hard way, I’ve learned to just not verbally communicate on those days!
Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
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Everything from navigating the internet, to making calls, and driving can become a HUGE deal when you’re in burnout; it’s a very disabling condition made worse by blank stares and suspicion when we try to explain why we aren’t able to meet usual expectations. I’ve been fighting this mofo for over a year, but have experienced it for a duration as short as a few weeks, and have talked with other Auties who report it as short as a few days. Rest is the only way to get out of it, but think about resting your brain…it’s not exactly something our world is arranged for, is it? Ooofta.
Special Interests (SpIns): Clinically, this is where they accuse us of having “rigid/restricted interests,” but more knowing researchers are pointing out they’re our best shot to career success. In fact, that’s precisely how I’m writing this article despite burnout! These obsessions (Neurodivergence and writing here) seem to nourish our brain, like they somehow fuel it. They can be lifelong, or change with time, and most of us have more than one.
Stimming: Another community favorite! It’s described by clinicians as “repetitive motor movements,” and it looks like us moving our bodies differently than NTs, or otherwise doing things to engage sensory feedback — like playing with goo, staring at sparkly things, or touching velvet. These actions soothe the brain in a similar way to SpIns, and are often reactions to environmental, mental, or emotional stimuli.
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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 Many Autistics are Offended by Elon Musk’s Use of “Aspergers”

Published on June 10, 2021December 29, 2022 by megglesworthLeave a comment

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

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

In early May, Elon Musk made a personal announcement while hosting the NYC-based show Saturday Night Live, one that’s upset many autistic people: “I’m the first person with Asperger’s to host SNL, or at least the first to admit it.”

It’s okay if you’re not seeing the harm in that.

US society (and global perception at large) is becoming more conscious and undergoing many simultaneous changes in perception, like a massive detox — people at large are still ill-informed of impactful issues concerning disadvantaged communities, and the autistic population is no exception.

All we can do is listen to a variety of people from the affected communities, and learn.

In this case, community objections include the smaller issues that Dan Aykroyd was actually the first autistic person to host (which was uncool to gloss over), and the word ‘admit’ could reflect internalized ableism — but the main issue is around the term ‘Aspergers,’ which has become controversial, especially here in the US.

It was removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013, when Asperger’s Syndrome was absorbed by Autism Spectrum Disorder (many in the community prefer the more-descriptive Autism Spectrum Neurotype).

The associated functioning labels were also dropped due to harmful outcomes: those labeled “low-functioning” experienced opportunities being withheld despite ability and many in the “high-functioning” category were conversely presumed able to do things that they could not, therefore denied support and accommodations, leading to meltdowns and reduced functionality (and worse).

Basically, the functioning labels were a hot mess that left a lot of autistic people traumatized.

The new way has many flaws as well, mostly for also having a vague approach that leads to similar experiences of ableism — but at least it’s a little more specific and refers to support needs rather than pretty directly implying ability in the verbiage. Now, formally diagnosed autistics are assigned a Support Level at diagnosis. (Self-diagnosis is also widely accepted in the community due to excessive bias and barriers in the diagnosis process.)

I have a diagnosis of Level 2: Requiring substantial support. I was just diagnosed last year, but suspect I’d have been a Level 1 around 6–7+ years ago, as the problematic areas have greatly increased; something that’s common among autistics who mask their traits.

It’s presently a helpful distinction for me, as being without support has resulted in extended burnout and frequent meltdowns — however, it’s easy to see how it could backfire in very similar ways, especially as troubling traits fluctuate.

To provide an example of how problematic autistic traits can be fluid,
at this time I’m capable of doing things like writing essays about my current special interest (ta-da); but if I were to try to do this in an office, early morning hours, or even attempt to change topics, I’d very likely wind up having a meltdown, which would then take days (or more) to recover from.

I wasn’t always so sensitive in those respects and easily flew above the radar by subconsciously masking my traits (as happens, that backfired in a multitude of ways, including increased need for support).

Presently being a Level 2 doesn’t mean that I’m more intelligent than a Level 3, or less so than a Level 1.

These levels have absolutely nothing to do with intelligence, nor capabilities at large — instead describing our need for support/accommodations in order to function in our (neurotypically-biased) society.

The DSM describes differences in ‘social communication’ and ‘restricted interests & repetitive behaviors’ (the latter of which are affectionately known as special interests and stimming in the autistic community). This is a change from the old paradigm, in which those with Aspergers were widely viewed as being more intelligent due to superior intellectual development, a perception that has not died.

Public perception has very real effects.

When Elon Musk publicly disregarded the changes of DSM-5 in its home country, he portrayed himself as someone more intelligent than the autistic community at large; and the continued use of the term has negative ramifications on other autistics.

He could have used the updated terminology, helping to erase harmful stigma via a show that’s been a US culture staple for decades — but instead, he perpetuated it.

Sure, maybe he didn’t know, but given his fame and legendary genius status it’s safe to presume that someone gave him a head’s up, or he got there on his own; particularly since the change is nearly a decade old, and he’s been based here since 1995.

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!)

7 Benefits of My Late Autism Diagnosis

Published on April 6, 2021January 21, 2023 by megglesworthLeave a comment

It’s about brain functionality and mental health, not “feeling special.”

April 6, 2021

People who are autistic need to know that they are — we’re wired differently, and there’s power in learning how. Photo by Felicia Buitenwerf on Unsplash

Seven months ago, at 37 years old, I was diagnosed with autism.

What. A. Trip.

One of the many ways it’s so bizarre is discovering the bewildering reactions that some people have to the late-diagnosis community, especially on internet spaces like YouTube and TikTok.

Most of the comments tend to be positive ones from other autistic people, but it’s also common for “normal” neurotypical (NT) people to troll these posts and make disparaging comments.

In these online interactions, the motivations of the often relieved and jubilant newly diagnosed autistic person are questioned by the NT — “You’re not autistic, you’re just weird. If you don’t even seem autistic, why claim it now?”

And it’s not uncommon to see such comments even on videos that talk about dealing with trauma related to being unknowingly autistic, making it seem like they didn’t even bother to watch the video before doing the gaslighting.

These people often accuse the autistic person of just seeking attention, a reason to feel special, or something to use as an excuse.

I don’t know what to make of this behavior. There are so many people engaged in this cruel nonsense, it’s really quite sad. (They seem sad. Why else would you do that? #hurtpeoplehurtpeople.)

But mostly, it’s just mind-bogglingly messed up.

Despite my having had a decisive and thorough professional assessment, and despite it concluding I’m Level freakin’ Two autistic (not that self-diagnosis isn’t valid, it is), just reading these kinds of public exchanges led to my experiencing persistently defensive thought patterns, a kind of imposter syndrome eating away at my new—and desperately-needed—clarity.

This internalized ableism is common among the newly diagnosed, which is dangerous considering the terrifying mental health stats in the autistic community.

Plus, we’re trying to emotionally and mentally process so much already — finding out you’re actually autistic after decades of thinking you just really sucked at being normal is disorienting, to say the least.

To say a little more: discovering that you’re actually autistic after decades of trying to be NT is a complete and total mindf**k.

I had trouble sleeping for months afterward because I was plagued with painful memories from my past, slivers of trauma that finally made sense after diagnosis coming up to be reprocessed under this new lens, over and over and over and over and over and over…

It was a fragile time, to say the least. I clung to autism studies and first-person testimonials to keep some semblance of my sanity; each new piece of information clicking into my psyche, helping me understand that I’m not broken, I’m just different. Knowledge truly is power.

So, it’s really frustrating to finally find a lifeline—a sign of hope after decades of feeling like life is impossible—only to have ignorant people question its validity.

And there are all kinds of people assuming that autistic stereotypes are the full picture, that autism can be spotted with one’s eyes rather than by extensive knowledge of one’s internal processes.

This perspective is normal, which creates an abundance of toxic behavior.

It has to stop.

People need to understand what autism truly means, so that they may stop making things even harder for us—even well-intentioned people know so little about autism in adults that their comments are often persistently painful.

For example, saying “I can’t even tell, you seem normal enough, you’re cool,” isn’t a compliment—it’s an insult to the very autistic parts of me I’m not showing you, as well as my community. (Which is actually cool AF, FYI.)

To that end, here’s a little more about the journey; then I’ll share the benefits of having found my answers, at last.

From Lost to Found

A year ago, I was wildly disappointed with myself for being so relieved that the pandemic meant I could stop pushing myself to “get out there,” an effort that had led to a renewed eye twitch, aided by several already-established relationships that had me distraught.

Despite years of working to cultivate more authenticity, I was riddled with behaviors that, in hindsight, were clearly unconscious attempts to cover my differences and make myself more palatable; a coping technique called masking that’s common in autistic people (especially those of the so-called “female” phenotype, which can present in any gender)—but the actual effect was to make me feel misunderstood, unseen, and unheard.

And, since I was clueless as to why this was happening, I had no idea how to stop creating the same lonely results.

I was plagued by insecurity, always trying to stop mentally hand-wringing about my differentness, my loneliness; trying to answer endless questions about why I did the things I did and felt the way I felt.

Finally being diagnosed with Level Two autism was like being thrown a life preserver in a sea of soul-sucking confusion.

Why did people continuously misinterpret my words? Why did they assume things about me that are untrue? Why was I persistently underestimated? Why did they say I sit and move my body weirdly? Why was I still so tired, why couldn’t I ever keep up? Why did light and sound overwhelm me? Why did I always feel like I was making up for some unidentified shortcoming, even with strangers? Why did people have such odd reactions to me? (What did I do wrong this time?!)

And why did I always feel like I had to put on a show, a facade of someone less complicated than me? Less emotional, less opinionated, less open, less awkward, less neurotic. Just. Less.

And why was it so hard to stop? Why did it feel like my very safety was tied to this mask?

What the heck was my deal?!

It was literally maddening—after years of struggle and related physical ailments, my mental health finally became truly dangerous to my safety; with my being hospitalized twice because I was afraid of what I might do alone overnight when physical and mental health symptoms peaked.

Finally being diagnosed with Level Two autism was like being thrown a life preserver in a sea of soul-sucking confusion. It’s been really challenging to process, but it absolutely saved me as well.

Goodbye, self-hate. Hello, self-wisdom.

The experience of late autism diagnosis can also be compared to using the instructions and procedures for a PC your whole life, then discovering that you’ve been a Mac all along. You’re not inherently broken, you just need to do things differently for smoother performance.

There’s a learning curve, of course, but after decades of mysterious errors and malfunction; I finally have the manual to my operating system, at last, plus a community full of people navigating the same errors and malfunctions.

To quote the autistic autism researcher Jac den Houting, “I wasn’t a failed neurotypical person, I was a perfectly good autistic person.”

Benefits of Late Autism Diagnosis

In an effort to help fight against the scourge of folks messing with the already stressed minds of the newly diagnosed, I’ve prepared a list of seven actual benefits of discovering your neurotype isn’t typical, but autistic.

I hope that it will help arm potential allies by describing some of the internal experiences as well as the benefits; and I also hope that it will help my fellow auties feel more secure in their autistic selves, as well as encouraging those who wonder if they might be autistic to start seriously learning about it—maybe you is and maybe you ain’t, but either way, knowing is a good thing.

A community of (quite literally) like-minded people. It’s amazing to be able to log into an online autism support group after a horrid day and be like, “Had a mega bad public meltdown due to a ridiculously loud noise and bright lights, then had to sit in a dark room and stim out with goo for hours, anyone relate?”—and not only will they relate, but they’ll probably reply with empathetic stories and memes to help cheer you up.
Tools to identify and manage adverse autism traits. Executive functioning issues used to result in my internally mean-girling myself for being “such a ditz,” but now I know that it simply means my autistic brain is getting tired (because it lives in a neurotypical world, which is tiring), and I just need to take a break, maybe go stare at something sparkly for a while (which, like the aforementioned goo, is a helpful tool called ‘stimming’). Goodbye self-hate. Hello self-wisdom.
Tools to identify and maximize positive autism traits. For example, like many auties, when my brain’s happy I can hyper-focus on a chosen task and work very quickly, for a very long time. This is especially common with special interests (SI), so finding a way to make your SI your job is maybe the ultimate maximization of positive autism traits. Other potential areas of strength to maximize: naturally thinking “outside the box,” honesty, passion, visual thinking, and unique (+ uniquely delightful) sense of humor, for starters.
Better ability to advocate for oneself. Now that I have an accurate way to describe my challenges, it’s a hell of a lot easier to explain why my needs are different and what, precisely, they are. For example, now I know that loud and/or bright things really agitate me due to my high sensory sensitivity, their ability to induce a public meltdown is because my brain’s not doing so well in recent years—and autistic meltdowns due to sensory overwhelm are very common, especially when already struggling.

Meltdowns also contribute to the incapacitating state of autistic burnout, which means not being able to depend on one’s brain. So actions taken to limit the overwhelm aren’t me being too particular, it’s protecting my neurological and mental health—so, my life—it’s not only okay to ask for what I need, it’s crucial.
Less confusion. As you may have caught on with all those questions before, I was riddled with confusion before my autism diagnosis. Autism is a neurotype, basically a type of brain; so interacting with the world was very disorienting due to my thinking differently, and further so because I didn’t know that.

I had no idea why technology is the opposite of intuitive, why forms that take others a few seconds make me want to poke my eye out with the pen, why so few people seemed to “speak my language,” etc., and it all added up to me feeling like an alien, like maybe this world just wasn’t built for me. (This is a common viewpoint among autistic people.)

But now I know the latter part is actually true—that the world was indeed built for a different neurotype—those things aren’t further triggered with a lifetime of confusion, anger, and shame. It still frustrates me that we aren’t societally considered, of course; but now that I at least know what I’m frustrated about, those moments feel less…explosive, even despite my currently not being in a great neurological state.
Improved confidence via self-understanding. Knowing why I am the way I am also helps worlds in the self-acceptance department. I’ve been through a lot and still have work to do, both internally and externally, but, day by day, it gets better. I find myself in fewer negative thought patterns around past failures and rejections, and more hopeful about connecting with people, with life, due to this expanded perspective of who I am and what I need.
Paradoxically, feeling more “normal.” It’s so strange that internet bullies so often bring up “you want to feel special” allegations because I actually feel way less original after spending time in the autistic community. Many of my “quirks” are actually just autism traits, and many others are expressions of such, seen displayed by other auties all the time — like doing thissssssssss, for a random example. And it’s awesome. I freakin’ love being able to log on and find thousands of people who actually speak my language, face similar challenges, and just generally get it.

The #ActuallyAutistic Movement vs. Sia’s Movie, ‘Music’

Published on March 11, 2021December 29, 2022 by megglesworthLeave a comment

Authentic representation matters, especially when the demographic is so vulnerable.

Image for post — #ActuallyAutistic actor, Anthony Hopkins, with Kate Winslet. (Image via Lester Cohen and People)

Like Sir Anthony Hopkins, I am a late-diagnosed autistic person.

And when I tell people that I was diagnosed with autism at 37 years old, they very often don’t know what to make of that fact — some even hinting that since I don’t “seem autistic,” that I might be misdiagnosed, that the highly-experienced mental health professional who spent hours diagnosing me was incorrect.

This experience is rather typical for late-diagnosed adults.

The reasons for this are multitudinous, but can largely be filed under “autism updates in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition” and “stigma and misrepresentation,’ which is where Sia’s movie Music comes into play — as the film is highly problematic in that regard.

As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”

In 2013, the DSM-5 redefined autism when it combined five developmental disorders (including Asberger’s) under Autism Spectrum Disorder, a term contested in the autism community, with many favoring the less problematic, and more descriptive, Autism Spectrum Neurotype; but a change that’s generally been supported in both the scientific and autistic communities, though some do call for more revisions to help autistics find diagnosis (and its tools) before traits become more problematic.

The changes were completed nearly a decade ago, but are still being integrated into the often-archaic mental health system, and autistic females are still thought to be extremely underdiagnosed.

One of the reasons for this underdiagnosis is that females are often adept at a coping method called masking, which involves suppressing natural reactions in an often-unconscious attempt to “seem normal.” (It should be noted that this presentation, called the ‘female phenotype’ is another debated term as there’s great evidence that any gender is capable of this — Sir Hopkins, an accomplished actor, is a very likely example of a male who could likely sort out “acting normal” via observation and imitation.)

Though masking can be very effective, this coping method often becomes problematic for the autist’s mental and neurological health.

Masking is highly associated with autistic burnout; a condition which very often results in a severe physical and neurological incapacitation (including going nonverbal) that can last for months, or even longer, and is (unsurprisingly) associated with suicidal behavior.

So, while one might think that if autistic traits don’t persistently disable, they shouldn’t warrant a diagnosis — it isn’t that simple.

Hiding the way one’s brain functions requires an immense amount of neurological effort, and, sooner or later, it comes at a cost; and if society keeps getting the same stereotyped representation, autistic people will continue to be underdiagnosed due to them, and their therapists, not seeing autism as a potential diagnosis.

We shouldn’t live in a society where medical professionals often follow media and societal expectations over science, but we do, so we need the media to take portrayals very seriously.

The Representation Issue

To explore the second matter, “stigma and misrepresentation,” we’ll first turn to the #ActuallyAutistic movement.

Actually Autistic is a movement that was started by the autism community on Tumblr in 2011 and has since been spread to other social media platforms, which now has millions of posts across TikTok, Instagram, Twitter, Facebook, and other social media platforms.

The movement was started because people in our society, at large, have a very narrow idea of what autism looks like, and it causes a lot of really harmful issues for autistic people.

The thing is, autism does not look or “seem like” anything — and the media is telling people it does.

We’re individuals with unique experiences, each affected by different areas of the spectrum; plus, many of us are masking our traits in order to survive in a society that seems determined not to take us seriously.

As we say in the neurodiversity community, “If you’ve met one autistic person, you’ve met one autistic person.”

To further explain, autism also can also manifest in all kinds of ways because the autistic neurotype affects many aspects of neurological function.

Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter.

Most think of the spectrum as a linear construct that goes from ‘mildly autistic’ to ‘very autistic,’ but the autistic experience is actually more akin to a color wheel representing many different traits and behaviors within the areas of executive functioning, perception, social abnormalities, movement, language, monotropic mindset (focus on special interests), sensory processing, and more.

So, Rain Man might have been highly affected in the areas of language, monotropic mindset (counting), and social abnormalities.

Sam on Atypical might have a very similar profile, and, more importantly, expressed in a very similar way.

The same goes for Sean Murphy on The Good Doctor; as well as Abed in Community and Sheldon Cooper on The Big Bang Theory, who arewidely perceived as being autistic.

Therein lies the problem.

When physiological conditions are repeatedly portrayed in the media in a similar fashion, it creates a broad misunderstanding and stereotyping in regard to what conditions actually look like, and, crucially, what responses are actually helpful, and which can (often unintentionally) harm.

This gap in public perception and awareness leads to a lack of emotional support, denial of crucial services, and even misdiagnoses — which is a huge deal as 72% of autistic people are considered high-risk for suicide.

How autistic people are represented matters.

It needs to be accurate, and it needs to involve us.

The Trouble with ‘Music’

So, you might be saying, “What about Sia’s movie? That’s different, it’s about a female.”

Unfortunately, ‘Music’ has not only had oodles of ableism issues, but Sia herself taunted the autistic community when the abundant representation issues were brought up on Twitter. (This controversy resulted in the filmmaker deleting her account after publicly apologizing.)

Makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person.

Additionally, Music appears to be a female version of a similar profile: speech problems, monotropic mindset (music), and problems with social awareness — with a large helping of differences in movement, resulting in highly-problematic stimming imitations performed by a neurotypical actress.

And, again, it’s expressed in a very similar way, Music is a lot like Rainman…but with more pizazz.

There needs to be a wider representation of the autism spectrum, so that people may gain a better idea of all the different ways we can appear in life, and stop unwittingly harming us.

To give an example of a potential presentation that defies stereotypes, I’ll cite another fictional character dubbed likely autistic by many autie fans: the wonderful Leslie Knope, of Parks and Recreation.

Knope is a passionate and hilarious woman who only wants to talk about her special interests (politics, her friends, waffles, and Friday Night Lights), can behave aggressively (often inadvertently), has great difficulty understanding boundaries, and though she’s extremely compassionate and caring, the emotional reactions of others often surprise and confuse her, which continuously causes issues. (She’d have a really challenging time in the “real world,” I guaran-fucking-tee it.)

Or, better yet: the similarly dynamic, complex, and utterly delightful Matilda on Everything’s Gonna Be Okay, played by Kayla Cromer — who is actually autistic!

As Matilda’s a recent grad, maybe in future seasons we’ll see her dealing with day-to-day adult autism issues; trying to make it in an office without masking herself into burnout, dealing with sensory issues whilst need to “be professional,” managing grocery shopping with executive functioning issues, and the challenges of stunted success due to simply not “seeming normal.”

And while I could do with less self-deprecating humor from Matilda in regard to autistic traits, I love knowing that the performance is at least coming through an actress who knows what it feels like to behave in ways that are often misunderstood; and it’s also just so healing and inspiring to see an actually autistic person rocking their chosen field.

Though I still watch The Good Doctor and I wish Atypical hadn’t been canceled, now it has been done: Cromer, and Everything’s Gonna Be Okay, have proved that an autistic person can lead a television series.

As a result, if a new show or film comes out without true autistic representation, it will almost definitely get shit from the #ActuallyAutistic community.

Which brings us back to Music.

Personally, I’m not black-and-white on if only autistic actors should play autie characters; but they absolutely have to be extremely knowledgeable about why we do the things we do, they should understand how it feels, physiologically — and no one knows that better than someone who is actually autistic.

This is especially relevant for a character like Music, who is completely nonverbal (which doesn’t mean vacant, as many presume) and has very visible stimming traits.

We Have So Much to Offer, Please Help Enable us to Do So

I truly cannot overstate the importance of our society becoming more aware of the fact that autism can appear in a myriad of ways, especially in adults.

It’s extremely difficult to live in a society that was literally built for a different kind of brain, that persistently overwhelms our neurology; a society that disables and disregards us, and very often when there’s a simple way to just work with us, if only people would choose to try instead of dismiss.

And I believe, I hope, that they would choose to work with us if they just knew how; and if they just had any idea of what we’re actually up against.

The autistic community hasn’t been able to get people to understand on our own; unsurprising as there’s a lot working against us, and the vast majority of us are exhausted and platform-less.

We need the media’s help with this. We need you to start telling our stories.
Our actual stories, in all their complexity and variety.

They need to be heard so people will start taking us seriously, so we can get the support we desperately need. When you start listening to autistic adults, hearing our harrowing tales of trying to survive in this incompatible world — that horrifying statistic about 72% of us being high-risk for suicide starts to make a lot of sense.

We are truly up against so much, even if we don’t “seem autistic” in the moments that you’ve witnessed.

But our struggles don’t mean we have nothing to offer the world; as wonderfully demonstrated by Sir Hopkins, Miss Cromer, and so many others, we have much to contribute.

We just need people to start asking and learning how to work with us, rather than (often unwittingly) working against us, so that we may live up to our true potential; and while readers are encouraged to peruse the internet of #actuallyautistic, we desperately need the media to take the lead in ensuring accurate and authentic representation of the vast autism spectrum.

So, makers of streaming art — please let this Sia moment be the last stereotyped representation of an autistic person. Fund actually autistic projects, hire actually autistic creatives, and seek actually autistic consultants.

Nothing about us, without us.

“Resting Niceface” Made My Invisible Illness Go Undiagnosed For 25 Years

Published on July 11, 2018December 29, 2022 by megglesworthLeave a comment

I smile a lot. Not because it’s my favorite, though I certainly don’t mind, but because my face just does that.

By MEG HARTLEY
Ravishly, 07.11.18

Yesterday, I went to a doctor’s office that I hadn’t been to in months.

“How’s it going?” I asked the woman checking me in.

“I remember you!” She replied. “You were this nice last time as well. It’s so good to see you again!” She seemed genuinely relieved by something I had done, but all that happened was a normal greeting.

Strangers frequently overshare with me and then say, “I don’t know why I told you that!” I regularly get stopped in stores because people think I work there. I am trusted with the belongings of random people. All of my roommates wind up calling their pets “traitors” after I move in. Children tend to adore me, even when I’m annoyed at their presence. Everyone thinks I have a crush on them.

Like Buddy in Elf, Hank Hooper in 30 Rock, and all blonde women in Bechdel-failing movies, I have Resting Niceface, the opposite of the more well-known Resting Bitchface. It’s generally an awesome thing to have. People smile back, for one thing — that whole sugar/vinegar thing is true! Men rarely demand I smile because it’s already sitting there on my face. People are usually comfortable with me. I get lots of hugs.

But my Resting Niceface also causes confusion. Acquaintances are often taken aback when I don’t smile. People also sometimes don’t listen to my words. More than once I’ve expressed concern about something and had people actually respond like I’d said something positive. A couple of guys have been bewildered when I broke up with them — even after I repeatedly told them I was pissed and felt like I wasn’t being taken seriously.

So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of pretty severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was fine, so I figured that they must have been through something similar and that these things were normal.

This phenomenon has also played a significant role in why I was just recently, at the age of 33, diagnosed with an “invisible illness” that I likely started showing symptoms of when I was eight. I vaguely remember asking a pediatrician what was wrong then after a test for ulcers came up negative. He looked at me as if he could assess my diagnosis from a glance at my face and said, “Oh, probably nothing. You’ll be fine.”

At least as a kid and teenager, my parents took me to a doctor when symptoms popped up, garnering misdiagnoses of asthma, hypoglycemia, and a trauma-induced mental break. But out on my own, I turned to friends with my symptoms. They assessed me much like that doctor, looking at my face and saying, “I’m sure you’re fine.”

So I ignored cysts large enough to debilitate, unusual reactions to pretty standard intoxicants, and bouts of severe depression. After I’d recovered from whatever had me down, the problems felt like pretty small things. I mean, I got better, right? And everyone else thought I was okay, so I figured that they must have been through something similar and that these things were normal.

My symptoms morphed over the years, transforming into what looked like a frequent flu in my late 20s. I’d show up at work after taking time off, feeling miserable but apparently looking just fine. Several bosses accused me of faking it, and I lost two jobs due to their suspicions. (Others called me a trooper and told me they appreciated my positivity. It’s a matter of perspective, I guess.) Doctors told me it wasn’t the flu, but most of them too were “sure I was fine.”

I’d reason away the symptoms, chalking them up to my lifestyle choices or telling myself I was just being a baby. I convinced myself it was just a super-duper frequent flu. I told myself that dizziness was very common and forgetting your close friends’ names was normal — just a brain fart! I figured that physical activity was simply not my forte, that some people don’t like moving — ignoring that I was once a competitive athlete. I figured that I was just clumsy and that’s why I was constantly dropping things and tripping — ignoring that my sport had been gymnastics. I decided that I was just allergic to everything, and that’s why I had random rashes and swelling. I blamed sporadic but extreme irritability on both birth control and obnoxious people.

For a long time, it was easy to believe I was fine.

So I groggily adjusted to the new normals, to new mysterious pains, to new frequent low fevers, to new levels of confusion. It wasn’t until about a year and a half before I became homebound ill that “agreeing I was probably fine” turned into straight-up denial.

The flu-like symptoms, extreme tenderness, debilitating fatigue, and tear-inducing “aches” started crashing in on me most nights, accompanied by a tingly pain. I turned into a dreadfully flaky person, canceling on people at the last minute due to my health. Then I stopped making plans altogether. And not long after that, I had to stop working too.

Throughout, my Niceface kept confusing doctors and assuring folks when it needed to be conveying urgency to them.

Eventually, after nearly 30 years, I finally got a diagnosis. Methylenetetrahydrofolate reductase mutation, or MTHFR for short, is a relatively common genetic mutation that is often innocuous — but some types of mutations are more health-adverse. It can lead to heart troubles, infertility, autoimmune disorders, and other kinds of disease. For me, the manifestation was a severe B12 deficiency — nearly low enough to kill or paralyze me.

A year and a half of tests after the B12 revelation, I was also diagnosed with fibromyalgia, another disease of the nervous system. With the help of a complete diet change, gradually increasing exercise, a move to a hotter drier climate, and many other efforts, I’ve made a stunning recovery. I went from being on near-complete bedrest to now working a part-time job and freelancing on my days off.

I’m still a long way from where I’d like to be. Very tiny amounts of activity still exhaust me. I have absolutely no social life; I work, I rest, and that’s about it. I still have talking troubles from time to time, suddenly getting slurry and confused. But I’ve come so far, especially since getting diagnosed. And maybe it’s just the optimistic personality that so often comes hand-in-hand with Resting Niceface, but I bet I’ll make a total and complete recovery.