advocacy – Meg Hartley

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

Published on December 22, 2022December 27, 2022 by megglesworthLeave a comment

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

Dec 21, 2022

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.

These shocks are *INTENSE*, as in 22.5 times stronger than an electric fence. Source: https://www.federalregister.gov/documents/2016/04/25/2016-09433/banned-devices-proposal-to-ban-electrical-stimulation-devices-used-to-treat-self-injurious-or

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.

7 Benefits of My Late Autism Diagnosis

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

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

April 6, 2021

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

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

What. A. Trip.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It has to stop.

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

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

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

From Lost to Found

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

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

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

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

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

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

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

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

What the heck was my deal?!

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

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

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

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

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

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

Benefits of Late Autism Diagnosis

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

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

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

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

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

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

End-of-life hospital care in California could soon include cannabis

Published on October 3, 2019December 27, 2022 by megglesworthLeave a comment

Meg Hartley
Published on October 3, 2019· Last updated July 28, 2020

Updated 10/24: On October 12th, Governor Newsome unexpectedly vetoed SB 305, citing conflicts between state and federal laws as well as potential loss of federal funding. He did so “begrudgingly,” calling the federal government’s position on cannabis “ludicrous.”

The awkward legal-ish status of cannabis is something that affects many. And out of those, perhaps terminal patients are the most in need. When someone is painfully dying in a hospital, they are generally pumped full of drugs that often leave them barely conscious, or fully asleep.

Ryan had stage 4 pancreatic cancer that had reached the point where he needed professional care, but his only option to treat the intense pain was morphine, and even fentanyl—which is up to 100 times stronger than already-potent morphine⁠—leaving him barely conscious, or asleep. The last days of his life were being stolen, and he wanted all the coherent time he could gather to spend with his 9-year-old son.

So Ryan asked his father, Jim Bartell, to get him off the pharmaceuticals so he could function in some capacity during his last days. Jim located a hospital that would allow cannabis, and Ryan was promptly transferred to it. On the first day that Ryan was allowed cannabis, they had to spray a tincture under his tongue because he couldn’t even swallow.

But by the next morning, he was reportedly alert, talkative, and pain-free. Ryan was able to spend his last two and a half weeks of life chatting on the phone and taking visitors—connecting, laughing, and taking the precious time to say goodbye.

But Jim Bartell’s mission had just begun

Ryan Bartell passed away on April 21, 2018, but Jim wasn’t done with this issue. He drafted a bill that would allow terminally ill patients to use medical cannabis in hospitals.

Ryan was able to spend his last two and a half weeks of life chatting on the phone and taking visitors—connecting, laughing, and taking the precious time to say goodbye.

In an interview with Leafly, he shared that as President of a San Diego firm that handles things like government PR, he’d been prepared for this mission—he’d already reviewed hundreds of government bills over the years.

After three long months of research and another three weeks of drafting, he took SB305 to Senator Ben Hueso at the end of 2018. Sen. Hueso agreed to sponsor it, and Jim and his staff continued to work together near daily until SB305 was submitted in February. Much of the pushback came from the California Hospital Association, who feared that they would lose federal funding as cannabis is still federally classified as a Schedule I drug.

But they worked through the opposition, drafting the bill so if the government were to change position and enforce federal prohibition against cannabis—then that hospital would be suspended from compliance.

And on September 11th, 2019, the California State Legislature unanimously approved their Senate Bill No. 305, which was aptly, and powerfully, titled “Ryan’s Law.” It’s now on its way to California’s pro-cannabis Governor Newsom, who is expected to sign it in the coming weeks. If all goes as predicted, it will come into effect on January 1st, 2020.

This means that starting next year, terminal medical cannabis patients with a prescription will be able to use cannabis in forms other than smoking/vaporization in hospital care. Cannabis will be procured by the patients, not the hospital. Hospitals will not be allowed to interfere with its administration, but will be allowed to help if needed.

Next steps for Ryan’s Law

Jim doesn’t plan to stop there. He says that this issue is affecting people like Ryan, and the people who love them, all over the country—so he’s doing something about it. First steps are to take on the geographically (and politically) close states of Oregon and Washington. And now they’ll only have to amend the bill with state-specific health codes instead of starting from scratch. Hopefully these states align quickly, and others as well.

Medical cannabis may be legal in many places, but patients in need of this medicine still face obstacles in terms of using it when and where they need it. While the chronically ill and those still in the fighting stages of diseases aren’t yet protected, this is an encouraging step in the right direction.

While some other states have on the books that they allow cannabis in hospitals, this will be the very first law that requires allowing it. Finally.

Even with such strict laws in place, a massive library of studies supporting the power of medical cannabis have amassed over the decades. It’s beyond time that medical cannabis became more accessible.