Autistic people don’t need shock aversives, we need vocal allies.

The government has one more chance to stop the torture this year — but they need pressuring, NOW.

Dec 21, 2022

Photo by Edgar Chaparro on Unsplash

There is a cruel practice happening to autistic and otherwise disabled humans in Massachusetts that the UN has very literally deemed torture, attempting to use painful electric shock devices in order to control their behavior. This week, Congress can stop this inhumane treatment by essentially re-including a ban in the end-of-year omnibus bill — but we need allies to put the pressure on them, now. There is no excuse for this kind of treatment, but theirs is claiming to prevent aggressive and/or self-injurious behavior, which has been found factually inaccurate and just makes no damn sense in the first place. Here’s the full scoop:

Being autistic means a lot of things. (A whole spectrum even.) But one thing that most autists have in common is that our differently-wired brains can get overwhelmed by stimuli typical brains handle just fine. It’s intensely unpleasant — for me, it’s akin to being strapped too-tightly to a rickety rollercoaster I really don’t want to be on while a bomb continuously explodes in my brain — so when that neurological overwhelm happens, there’s naturally a breaking point.

How that breaking point manifests will look different in different autists, but for some of us that overwhelm can lead to aggressive and/or self-injurious behavior. I am one.

After decades of dealing with sporadic but uncontrollable episodes, I’ve devised ways to help avoid them: now when I feel that warning of an oncoming meltdown (which, for me, used to usually end in self-harm) I know I need to get away from any surrounding people with as little interaction as possible, make the lighting soothing, take meds, put on lofi hip hop, get some therapy dog love, call my safe people, cry it out, and floor = good. If I still feel that overwhelming urge to tear at my skin, I try to discharge and interrupt the painfully overwhelming energy by scratching the side of my rough couch (it can take it), and/or screaming into pillows.

Why am I telling you all of this? Because something that sure fucking isn’t listed is someone remotely shocking my body without my consent. But that’s exactly what’s happening at the Judge Rotenberg Center (JRC) in Canton, Massachusetts, where they claim to prevent unwanted behaviors like the aforementioned self-harm in people with ‘developmental disabilities, emotional disorders, and autistic-like behaviors’ by essentially creating the harm themselves.

They use an extreme form of aversive therapy via a device called Graduated Electronic Decelerator (GED), which sends strong electric shocks throughout their bodies when they exhibit unwanted behavior — like autistic meltdowns, and the overwhelm behaviors that precede them. To give you an idea of just how strong the shocks are, JRC’s strongest device, the GED-4, a type of Electric Stimulation Device (ESD) that isn’t approved by the FDA, shocks patients at 90 mA: nine times higher than a cattle prod (10 mA), and a whopping 22.5 times stronger than an electric fence (4 mA). In 2013, the UN Special Rapporteur on Torture condemned the practice, saying it “violates the UN Convention Against Torture and other international standards.”

It’s been very officially, internationally, declared torture — yet it still continues in the United States. The fight to get these kinds of devices banned in the US has been going on for decades (known online as #StopTheShock), but so far lawmakers haven’t made it happen.

In recent developments, the FDA tried to ban ESDs at large in 2020 stating, “FDA has determined that these devices present an unreasonable and substantial risk of illness or injury,” specifying, “ESDs present a number of psychological risks including depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness; and the devices present the physical risks of pain, skin burns, and tissue damage,” also stating, “ESDs have been associated with additional risks such as suicidality, chronic stress, acute stress disorder, neuropathy, withdrawal, nightmares, flashbacks of panic and rage, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and injuries from falling.” (So…decidedly not preventing harm.)

And guess what? Taxpayers are paying for all this increased danger and harm, and it’s not cheap; according to tax documents, in 2020 the Judge Rotenberg Center was paid $84,108,326 in grants and funding by our government. That’s money that’s not going towards actually figuring out how to better help autists successfully find our place in society, and we’re really struggling.

ASAN is asking autistic and disability allies to call your members of Congresss and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.

Again, the only defense the Judge Rotenberg Center (JRC) has for being the only place still using these inhumane devices is claiming the GED (a type of ESD) helps prevent aforedescribed self-injurious-behavior (SIB) as well as aggression (AG) and that they have the most difficult cases in that regard. However, the FDA’s 2020 inspection found otherwise, “25,000 is a reliable, conservative estimate for the number of the more extreme cases of SIB and AB in the United States. We have no evidence establishing that, of those, JRC receives the most extreme or refractory cases,” additionally stating, “JRC has not established that its residents on whom ESDs are used are refractory to other treatments, and the evidence shows that state-of-the-art alternatives have generally been successful even for the most difficult cases.”

It makes no sense. They have no excuse.

You’d think that’d be it, medieval torture treatment over, but not in our legal system. Efforts by JRC lobbyists resulted in the ban getting struck down on technical grounds in July of 2021, with new disheartening developments this fall. On September 28th, The Autistic Self Advocacy Network (a valued resource in the autist community), reported, “The bipartisan effort to #StopTheShock was included in the House version of the FDASLA Act, and was added to the Senate bill following a committee hearing. But yesterday, Congressional leadership announced that the final bill would be a ‘clean’ bill that drops many important provisions, including the ban.”

Fortunately, there’s another chance, this month: the end-of-the-year omnibus bill. And you can help.

ASAN is asking autistic and disability allies to call your members of Congress and ask them to include a ban on electric shock torture in the omnibus bill, ASAN’s provided a script for the call with a Proxy system for those unable to phone due to disability. So easy, so quick.

Please call as soon as possible and once you’ve engaged, please encourage others to do so as well by sharing advocacy info using #StopTheShock. I’ve truly only touched on the harms caused by the Judge Rotenberg Center. It‘s terrifying that this is legal in my country and horrific that they continue to stay in business (let alone receive millions in government funding). They need to be completely shut down, it’s criminal that it hasn’t happened already, but the very least the government can do is re-include the ban on the use of electric shock for behavior modification in the omnibus bill.

Autistic people don’t need shock aversives, we need vocal allies. Thank you for supporting us by calling your congress members today to demand that these devices are banned.

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.

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:

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.)

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.

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

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.)

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Sir Hopkins, normal’ing it up for ‘84 Charing Cross Road.’ (Image via ScreenRant)

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

Image for post
(Image via @ThriveAutieThrive.)

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.

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Abed might look wildly refreshing in this line-up, but these presentations are extremely similar — there’s so much more to the spectrum. Lineup: Sheldon of TBBT, Rain Man, Abed of Community, and Dr. Murphy of TGD (Image via @ThriveAutieThrive)

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’

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We don’t need Kate Hudson’s patience, we need actually freakin’ autistic portrayals in the media. (Image via Signature Entertainment)

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.

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Image via Twitter screenshot. (@Sia has been deleted.)

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!

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This is a neurotypical actress. This is not okay. (Image via news.com.au)

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

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Actually Autistic actress, Kayla Cromer, being a badass despite a hidden disability. (Image via Media Access Awards)

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.

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(Image via EGBO Giphy)

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.

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More of this please, media. 🙏 (Image via EGBO Giphy)