For two decades, a Massachusetts school has been under fire for torturing disabled students with shock devices. Now, activist efforts to end the practice may soon pay off.
In the mid-90s, around the age of eleven, I saw a television show on PBS about old asylums that would do horrifying things to people society deemed insane. It scared me, especially since it didn’t clarify what happened to those same people in modern times.
I asked my mother, who took some time before she answered. While waiting for her response, my mind raced with early memories I tried to suppress: frequent teasing, adults concerned about how I didn’t “act normal” and had atypicality in developmental milestones.
“Well, there’s definitely still improvements to make,” my mom finally said, “but those awful torture-like treatments don’t happen to people with mental health issues anymore.”
While she was right about most things, she was sadly wrong about this.
To this day, there are Americans being subjected to a treatment that the United Nations Special Rapporteur on Torture has officially condemned as torture at the Judge Rotenberg Center (JRC), a residential school for students with disabilities in Canton, Massachusetts.
Patients at the facility with “developmental disabilities, emotional disorders, and autistic-like behaviors” are being shocked using an extreme form of aversive therapy. This procedure sends strong electric shocks throughout an individual’s body with a device called a graduated electronic decelerator (GED). It is often used when patients exhibit unwanted behavior — which, according to those who have undergone the treatment — pretty much means not acting “normal,” a standard that the center defines loosely.
In fact, the movement against JRC, known online as #StopTheShock, gained traction in 2012, when partial footage of a Black autistic teenager named Andre McCollins being shocked thirty-one times in seven hours was made public. McCollins was allegedly forced to undergo the treatment for refusing to take off his jacket, while all but two of the shocks were for “tensing up” or “screaming.” JRC claims to only use GEDs in extreme cases, but, again, that deeply conflicts with the experiences reported by many people who have had to stay there.
Additionally, the only defense that JRC offers is claiming the GED is necessary to prevent self-injurious behavior (SIB) as well as aggression (AG) and saying that they have the most difficult cases in that regard. But the FDA strongly disagrees. The FDA’s 2020 inspection reported, “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 [electric stimulation devices] 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.” JRC doesn’t need to be shocking these already-struggling people, it’s just not necessary.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
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 that is not approved by the Food and Drug Administration — shocks patients at 90 mA, which is nine times higher than a cattle prod and around twenty-two times stronger than an electric fence.
The fight to end the torture happening at Judge Rotenberg has been going on for nearly two decades, but JRC’s influence and funding has been an obstacle. In 2020, they received $84,108,326 in grants and other government funding. That same year, the FDA attempted to ban ESDs at large, stating the agency “has determined that these devices present an unreasonable and substantial risk of illness or injury,” which could include “depression, PTSD, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms, and learned helplessness.”
But JRC reacted by suing the FDA, and in July of 2021 the ban was overturned by the U.S. Court of Appeals for the D.C. Circuit, stating, “a use-specific” ban “interferes with a practitioner’s authority by restricting the available range of devices through regulatory action.”
But, due to the efforts of community activists, most vocally the Autistic Self Advocacy Network (ASAN), that may soon change — the recently passed omnibus bill includes a provision that gives the FDA the right to ban contingent electric shocks used for behavior modification. Now the agency just needs to know that the public is against this torture and in support of the #StopTheShock movement.
We’d like to think that we’ve moved on from the days of treating people who can’t squeeze into a homogenized idea of “normal” as less than human, but in fartoomany cases, we really haven’t. As a neurodivergent person who’s had public autistic meltdowns — something that can get you put in places like JRC — this is a terrifying example. So, please, for the sake of the millions of neurodivergent people in this country, and especially those at JRC right now, please bust out that phone and start putting pressure on the FDA.
You can take action by tweeting @FDADeviceInfo and @US_FDA including the following message: “pass the rule banning the electric skin shock device without delay, #StopTheShock.”
Jennifer Msumba/Wikimedia — A drawing by a former resident of the Judge Rotenberg Educational Center depicting the punishment of GED shocks while restrained to a four-point board. According to the artist, residents sometimes received multiple GED shocks while restrained to a four-point board as punishments for standard infractions.
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.
There’s a divide of understanding within the autistic community, one that can get quite contentious online: autistic adults and parents of autistic children. I think a root of the problem is society telling parents they’re responsible for raising kids in a manner conducive to doing things in neurotypical ways, the “normal” way, and parents at large face a lot of homogenized expectations and judgment for noncompliance.
But when a child has different neurological wiring, a different neurotype, normal expectations and activities can actually overwhelm their nervous system, making it even more difficult to do things like process language and verbalize. And autists are expected just act like we’re not experiencing this kind of agitating or even painful neurological overwhelm when we are, something that leads to all kinds of trouble, like autistic meltdowns, which are terrifying. During meltdowns, sometimes it truly feels like my brain is going to catch on fire from all the misfiring and pressure, then finally just explode.
They. HURT. And we don’t choose them. And we don’t get to decide when they end.
These kinds of internal autistic experiences have been treated as if they’re irrelevant, as if autists just have behavioral issues and need to learn how to “act normal,” something that makes us even more vulnerable, and we’re already unnecessarily dying decades before our peers.
Bridging the knowledge gaps between us and allistic (not-autistic) folks needs to happen and it won’t without help from parents of autistic children — the hard truth is that you’re the ones society listens to, not us, and we’re dying from the societal apathy. We need parent allies to really listen and to help our voices be heard.
Here are 10 takes on this gap from other autistic adults, starting with a couple of autists who are also parents of autistic kiddos:
“I fall into both of these categories. I wish that there was more understanding of the different communication styles rather than people jumping down each other’s throats all of the time. I wish that functioning labels would be done away with and that the parents would stop speaking for us and listen to us instead.” A.M.
“I am autistic and so are my children. I’d like parents of autistics to understand that they need to pay attention to what is going on and how their child is interpreting the experiences around them. As much as they can at least. They can’t understand truly but they can watch out for say, how a child might be handling someone having a crush on them or trying to interact with them in some intimate way. . And then they need to not approach their autistic kid with morals and judgments the kid may very well not understand. I was raised in the church and things just never made sense, yet when my parents would address whatever the issue was, they’d do it through the filter of something that already didn’t logically make sense to me. Your kid won’t understand what you want or mean if you aren’t speaking a language they understand. They may have to set aside what they think they ‘know’ and approach things differently, potentially without some things (like religion) being the primary measuring stick of a moral code.” S.L.
“That when they talk bad about my autism, they are talking bad about me personally, because I don’t see myself as separate from my autism.” A.F.
“That [autistic adults] often do really understand what it’s like to be an autistic child and we can help them if they listen to us. We can provide insight from an autistic perspective that they may not even consider as a possibility. Yes, parents often do know best, but when your child has a different neurology than you, why not ask the people who share that neurology for help? After all, we want what’s absolutely best for our future neuro-kin generation and will fiercely do whatever it takes to protect them. […] . Saying things like “my child is more severe than you are” or “you can’t speak for my child because you’re not the same” isn’t helpful. We understand their experience even if it’s not the same as ours. And if you’re saying that me (a mostly speaking autistic person) isn’t the same as your nonspeaking autistic, you’re right. I don’t know that experience because I grew up speaking using my mouth words.But then why not connect with other nonspeaking autistics who do know and understand your child from that perspective?There’s so many types of autistic people in the world; you’re bound to find one that has a similar experience to your child.” M.S.
“They are not the ones with autism and that they have to help that person develop a system/ anything to move through life. I just feel like I was told how to feel most of my life and now I’m on my own idk how to process my actual feelings now that there’s ppl who want to listen. 🤷🏽♀️🤷🏽♀️” K.N
“Understanding that we aren’t doing ‘bad things’ for the sake of being malicious 99% of the time. I remember having meltdowns and being told I was ‘ungrateful’ and throwing a ‘tantrum’ when the reality was it was like something else had taken over me and turned me into an anger monster. I was never in control until I came down from it and I was blamed for ruining outings and embarrassing my parents. Same thing with not being able to or not wanting to do a task or go to an event. They took this as me being defiant. The reality is they never listened to what I was actually saying when I said no and instead framed me as a defiant child. Talking to your autistic kid on a more peer level will help you communicate better and they will tell you what they need. You just have to listen and learn your child’s language.” S.S.
“That it’s often a journey to understand our own feelings and symptoms. We don’t always have the answers, but that doesn’t mean others should speak for us.” C.T.H.
“What bugs me the most is the idea that something is ‘wrong’ with their child. This whole grieving how they expected their child to turn out or how they wanted their life to be or their kids life to be. Disabilities are not bad, don’t need to be fixed, your child doesn’t need you grieving the loss of the abled child you wanted. Secondly, stop exploiting them on social media to ‘help other parents’ or ‘spread awareness’. Thirdly, I wish they would realize that societal rules are completely made up. Your kid doesn’t need to speak, use fake pleasantries, have fun at amusement parks etc to be loved, respected, or to enjoy life.” C.H.
“That everyone is different. I really wish that was emphasized more. There is no ‘stereotype’, everyone still has their own personality.” S.G.
“That we aren’t unintelligent just because we can’t/don’t communicate the same way. I’ve noticed the same problem within the deaf/HoH community; if you can’t or don’t speak (or can’t speak well) people don’t take you seriously or assume you must not understand normal speech. I can understand you just fine even when I don’t know how to respond or am unable to.” B.N.
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.”
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).
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).
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:
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.)
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.
Executive Malfunction: This term refers to our struggles with planning, remembering information, problem-solving, organization, and time management. This is one way to get that painful brain pressure I was talking about. For me, it generally happens whilst trying to use technology, verbalizing, remembering, filling out forms, doing finances, or when in Autistic burnout (see #5), freakin’ anythiiiiiiing. Ugh. It can be very problematic and can lead to expensive errors, dangerous meltdowns, and further loss of functionality — and yet, an executive malfunction does not indicate intelligence deficits, we’re just struggling to do things in a way that wasn’t designed for our different neurology.
Meltdowns: I’ve gathered that to the observer, Autistic meltdowns look like a “tantrum” or “freak out’’; but what’s happening is actually neurological overwhelm, often due to sensory overload. Despite how it looks, it is a very physical issue, not just emotional. *And they. Are. Terrifying.* For me, at first, it feels like a huge overflow of anxiety in my body, as if on a malfunctioning rollercoaster and desperately want off, but I’m trapped…then I just kinda, for lack of a better term, go berserker. I want to stop, to behave rationally, but I can’t. It’s awful, almost like watching myself from the outside. . And in addition to the horror of the meltdown itself, which can last hours and involve self-harm/suicidal ideation, there are also other repercussions; the biggest being the loss of functionality and disabling neurological exhaustion, but there’s also the potential consequences for actions during the meltdown, and crushing shame, which can lead to worse. So, when an Autistic person says they’re fending off a meltdown, it’s crucial to take our needs seriously, because this issue is a very big deal and, at large, very misunderstood by the Allistic, or not-Autistic, community — especially regarding Autistic adults.
Shutdown: These happen for the exact same reasons and need to be taken just as seriously as a meltdown, even though it may not seem as serious. An Autistic shutdown is the brain’s way of directing all that overwhelm inward instead of outwards, causing the person to become non-responsive. For me, these usually happen after a meltdown, like my brain is just…done. (I’ve heard them described as something experienced in place of meltdowns as well.)
Going Nonverbal: When this trait is severe, this is completely literal; some Autistic people are nonverbal their whole lives. For me, this feels like my brain’s built a steep mountain around itself for protection, and eeeking any communication out (even typed) feels, and often is, simply insurmountable. It’s usually just when I’m dealing with burnout, but can also happen for brief periods when I’m overwhelmed. . For me, at the worst (*knocks on wood*) I can still mumble to myself, or my dog, but the words are likely to come out wrong and/or slurred and take immense effort to get out — which can lead others to very unfortunate conclusions, in addition to overexerting my already-taxed brain, which leads to further malfunction. So, via the hard way, I’ve learned to just not verbally communicate on those days!
Autistic Burnout: This mofo deals us extremely intensified problematic traits, usually after a time of intensified stress or exertion. Here’s a technical definition: Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus. . Everything from navigating the internet, to making calls, and driving can become a HUGE deal when you’re in burnout; it’s a very disabling condition made worse by blank stares and suspicion when we try to explain why we aren’t able to meet usual expectations. I’ve been fighting this mofo for over a year, but have experienced it for a duration as short as a few weeks, and have talked with other Auties who report it as short as a few days. Rest is the only way to get out of it, but think about resting your brain…it’s not exactly something our world is arranged for, is it? Ooofta.
Special Interests (SpIns): Clinically, this is where they accuse us of having “rigid/restricted interests,” but more knowing researchers are pointing out they’re our best shot to career success. In fact, that’s precisely how I’m writing this article despite burnout! These obsessions (Neurodivergence and writing here) seem to nourish our brain, like they somehow fuel it. They can be lifelong, or change with time, and most of us have more than one.
Stimming: Another community favorite! It’s described by clinicians as “repetitive motor movements,” and it looks like us moving our bodies differently than NTs, or otherwise doing things to engage sensory feedback — like playing with goo, staring at sparkly things, or touching velvet. These actions soothe the brain in a similar way to SpIns, and are often reactions to environmental, mental, or emotional stimuli. . It’s common to have different stims according to what happens, for example, I tend to handflap when I’m overwhelmed, I wiggle my fingers in front of my forehead when I’m thinking, and when in shutdown I love me some visual stimming. Some of us can mask the movements, but it’s bad for our brain function, so please exercise consideration and empathy before insisting we refrain. (See #1–5.)
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.
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 terrifyingmental healthstats 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.
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.”
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.
Authentic representation matters, especially when the demographic is so vulnerable.
#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.)
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.
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.
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’
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.
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!
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
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.
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.
More of this please, media. 🙏 (Image via EGBO Giphy)
Do you remember the last awful flu you had? How hard, or even impossible, it was to do your day-to-day activities? Folks with chronic illness deal with that level of inability and discomfort every day, sometimes all day long. The ways one can become incapacitated like this are many. From multiple sclerosis to fibromyalgia, myalgic encephalomyelitis (chronic fatigue) to arthritis – and the miserable world between, there’s a whole lot of people out there who are having a hard time with daily basic tasks.
10,000 Knives When All You Need is a Spoon
A lupus fighter named Christine Miserandino created a now-popular spoon metaphor to describe living with these limits. It all began when she was eating at a diner and a friend asked what it was like. To answer, Christine gathered all of the spoons from their table and a few more from others; then explained that when you have a chronic illness you only get so many “spoons” to get through each day. Every tiny thing uses up spoons: showering, getting dressed, having feelings, doing the dishes, everything. (Even thinking! This spoonie writer uses up most of her spoons just sitting at a computer many days.)
When you use up all of today’s spoons, you can borrow from the next – but since tomorrow is just as spoon-limited, doing so will leave you with even less spoons to get through the day. If you go spoon-negative you’re likely to cause a flare: an exponential increase in symptoms, which can last for weeks. And, to compound matters, changes in barometric pressure can make things like rain, wind, cold temperatures, snow, and even clouds cause flares; making the person that might have been able to meet you for dinner a few days ago, completely and utterly debilitated today.
It’s Not Easy to be an Alaskan Spoonie
Suffice to say, winter in Southeast Alaska brings an incredibly challenging time for most with chronic illness, or “spoonies.” Many are even homebound. Here’s a few ways to help your spoonie friends during this tricky time of year:
SNOW. Think of that miserable flu again. What do you think would have happened if you forced yourself to shovel snow in that condition? With a regular flu, you’d probably stay sick a bit longer. But for a desperate spoonie, doing so will likely cause a flare. When you’re already dealing with such intense symptoms, it’s hard to describe just how horrific a further increase is. If you’re able to help a spoonie shovel, or to just do it for them – you’re a true hero. Same for salting, taking care of stabby icicles, and all of the other fun our Southeast winters bring.
House chores.
Let’s be honest, your spoonie hasn’t even been able to shower in days, let alone do laundry or dishes. (Vacuuming? Haha. You’re funny.) Standing things are hard. And cleaning tends to require standing. Plus, cleaning one’s house does nothing to pay its rent or mortgage, and when you’ve only got so many spoons per day – one must prioritize. Lending a hand means the world.
Bring sustenance.
Who doesn’t love a hot cuppa soup or other nourishing treat when you don’t feel good? This doesn’t change when you’re sick all the friggin’ time. When faced with the task of cooking – standing for an extended period of time – many spoonies choose to eat conve-nient-but-unhealthy meals, or forego the meal completely. (Want to help, but don’t want to face the elements even in your healthy bod? Think about sending over a delivery meal, or even groceries with Instacart.) Be sure to ask about allergens as they’re common in spoonies!
Say Hey.
Being chronically ill is incredibly isolating. The world keeps spinning after you’re forced into a sickbed, and it can feel like it’s forgotten all about you. So if you think of your spoonie, tell them. Arrange a visit if they’re up for it. And if that’s not doable, try to call over messaging. Typing out how one feels isn’t particularly soothing. (It’s likely they won’t have energy to talk for long anyways. C’mon, go retro.)
Ask.
The ways your spoonie needs help are many, but they aren’t likely to share that information with you. When presented with the rare gift of human interaction, many of us would rather talk about anything but our stupid needs and diseases. (Though sometimes it’s all one can talk about, so please use patience and empathy in those cases…) Asking how you can help in an open-ended way, rather than offering something specific and withdrawing when it’s not needed – can be a real life-saver.
Alaska winters are hard on us all, but it dealing with crippling disease on top of it is straight-up dangerous. Just being there for your spoonies, especially this time of year, really means the world. Even if all you can offer is a text or a hug – please, get that texty hug on.
We all know the struggle. Do you know someone who’s hurting? Do you want to help, but fear it’ll create drama in your own life?
Whether it’s a health problem, a heart-wrenching breakup, financial woes, or any other struggle, we want to be there for our friends. These tips could help!
Hard times will test your relationships, and it’s all too common for people to find themselves facing the struggle alone. It happens to the best of us: we want to help, but distancing ourselves from friends in the thick of it is, unfortunately, the societal standard.
Why is it So Damn Difficult to Help a Friend Through the Struggle?
Friends have distanced themselves from me when I needed them, just as I’ve also been guilty. A friend of mine was struggling with serious health issues a few years ago, and it took me six months to call. I still feel remorse for not being there for her. So why do we do this?
The struggle of others can trigger our own unprocessed emotions and also bring up fears.
The struggle of others can trigger our own unprocessed emotions, and bring up fears and all the behaviors that fear comes with. Sometimes struggling friends are spiraling out of control and, especially if you aren’t currently close to that person, it feels like a good time to draw some boundaries.
But then there’s the other times.
The times where someone needs and wants help. There’s a specific problem, the person knows it, and they’re looking for solutions. In this situation, we have an opportunity to truly be of service to someone, even if all we can do is simply listen.
When we help others, we feel empowered, capable, and meaningfully connected. These are opportunities that remind us that no one can do it alone, and that no one should be expected to.
Here are 5 Things to Remember to Help You Support a Struggling Friend
From someone who’s been on both ends of this pickle, consider these tips to help out a friend in need.
1. Be Cool
Emotional conversations can be stressful, so try not to come off anxious. Plan to meet up somewhere safe where you can really talk and bring up their struggle. Before you meet up, think about what you’d do if you were in your friend’s situation.
Do they have a quality support system? Is there any way you can help that you’re comfortable with? Be prepared with solutions if they’re available, and be ready to listen.
2. Stay Positive
If applicable, share a similar struggle of your own and describe how you got through it in a positive way . . . but don’t glamorize it. Sometimes people define themselves by their struggle and think it makes them more interesting, and you don’t want to encourage this.
Be understanding, but gently guide your friend back to how they might fix/heal the sitch when the conversation circles back to the pain. Stay solution-oriented, which might mean helping your friend seek out professional help.
3. Bring Friends
This isn’t something that needs to be done alone, and it’s likely the kind of problem that could use multiple perspectives. If you bring someone else, be sure the person is a close mutual friend, or maybe a professional who can help in some capacity. This person needs to be trusted.
Oh, and don’t make the company a surprise. Make sure your friend knows you’re bringing someone else.
4. Don’t Judge
When your world collapses and you aren’t handling it well, it’s easy to be hard on yourself. Make sure you provide your friend relief from that, and take some time to reflect on how awesome they are before you see them.
Make it clear that you’re there to help from a place of zero judgement!
5. Check Yourself
Check in with your own emotions before you see your friend. Does their struggle trigger you? Pay careful attention to your thoughts and feelings, especially afterwards. If you’re severely triggered, it’s best to seek out your own healing before you help your friend.
6. We All Struggle, So Let’s Have Each Other’s Backs
Deep, emotional conversations are easy to avoid. We have our own sh*t to deal with, right? The thing is, helping a friend through their struggle may be what you need to figure out yours. Space away from your own problem is where you wind up feeling empowered to solve them.
When you’re there for a friend, you develop meaningful, lifelong relationships. Also, if you haven’t yet had your hard-knock times . . . you will, I promise. And when you do, you’ll want to have a friend by your side.
Thanks for your bravery and compassion, and good luck!
Meg Hartley 