*logs into personal twitter for the first time in days bc im back on meds*
*the Furry Main Character of the Day is some one saying ‘if you have BPD my art is not FOR you. the celebrity trial has given me the boldness to say this stupid shit btw"*
“How should I help an autistic person who’s having a meltdown?”
This is a question that hundreds of people asked after my latest Twitter thread about Sia’s movie, where the autistic character is restrained in prone position while having a meltdown.
That post explains why & how prone restraint is dangerous and traumatic. But a lot of people were wondering what should be done to help an autistic person during a meltdown. What are the alternatives to restraint? What would I recommend, as someone who’s had countless severe meltdowns myself?
I generally advise against trying to assist with a meltdown unless you know the person. If they’re totally by themselves, then it’s a judgement call. But more often than not, the person will already have someone with them who can help. Additionally, having a stranger approach during a meltdown has a high chance of making the situation even more stressful for the autistic person. So only approach the person in this circumstance if you think it’s absolutely necessary and would definitely help. For example, if the person was lost and needed assistance getting back to a familiar location.
Okay, so, what do you do if assisting the person is the right role for you to take?
The first step when assisting with any meltdown, is to minimize sensory input and ensure physical safety. Meltdowns are the result of overstimulation, so it’s important to try and reduce the amount of external factors that could be causing overwhelm. It’s also important to ensure that the person is not in immediate danger. Often, solving for those two things will involve changing location.
This is complicated, and if a meltdown is already underway it might be impossible to change locations safely. Even if you do change locations, the meltdown has already started so it’s not just going to stop immediately. So, here are some suggestions for direct support to the person. All of this depends on the environment, the tools available, and your relationship to the person having the meltdown. Use your critical thinking skills to consider different types of responses in different scenarios.
If the person can’t speak: assess what communication methods they can use, and what kind of communication is necessary. If you need to collaborate with the person to find solutions (particularly if you’re in a public place), using an AAC app, a picture-based communication system, pen and paper, or sign language will probably be your best bet. If the person can’t access those things but is still able to nod & shake their head, make sure that any questions you ask are yes or no questions. If you ask something like “Do you want to stay or leave?” they won’t be able to respond. Instead say, “Do you want to stay?” and then if that answer isn’t clear, “Do you want to leave?”
If the person is in a loud or chaotic environment: try to remove them as soon as possible. If they stay in that situation, the meltdown will probably get worse. Sometimes it can be hard for autistic people to move on our own when we’re in a meltdown. We tend to get stuck. So having someone lead us elsewhere can be extremely helpful in a circumstance where we’re too overwhelmed to move ourselves or even know where to go.
If the person has comfort items: try to make sure they have access to them. Blankets, pillows, stuffed animals, water bottles, chewies, stim toys, etc. can all help comfort an autistic person who’s having a meltdown. Some of us have favorite items that we carry with us everywhere. Make sure we have those with us (assuming the items aren’t lost; and if they are lost, help us find them).
If the person is injuring themselves or others: thefirst step is to try and find replacements for those actions, that meet the same sensory need. If someone is biting themselves, try to find something else for them to bite into. Many autistic people have chewies and other stim toys that can help us in this type of situation. If we don’t have one with us, sometimes other kinds of strong sensory input can work as well. Something that has worked for me in the past, to keep me from biting or hitting myself, is to put something frozen on my lips or in my mouth. The cold is strong and provides a very similar sense of relief.
Many autistic people, myself included, find it beneficial to be hugged tightly and to have our hands or arms squeezed by someone else. But this really depends on the person and their sensory profile, as well as your relationship to the person. Some autistic people hate being touched during meltdowns. So you have to be aware of the individual and their specific needs.
The ONLY circumstance in which a person should be restrained, is if they are at imminent risk of causing injury to themselves or others. Noncompliance, angry speech, etc. are NOT a valid reason to restrain someone. And the typical kinds of restraint used on autistic people are actually quite dangerous. Prone restraint, for example, can be deadly. The only kind of restraint I’ve had used on me that was physically comfortable and felt safe, was when my mom sat behind me and put her legs over mine (leaving some space so that I could still bend my knees a little bit), and hugged me from behind so that my upper arms were against my sides but my hands & wrists weren’t being held and could still move.
I’ve been restrained in a basket hold and in prone position, and both of those positions were extremely painful and traumatic to me. There are probably forms of restraint similar to the one I described that would work but are not harmful and that don’t run the risk of injuring the person. The key I think is to have the person sitting upright, and to restrict the movement of their limbs without putting any pressure on their torso or running the risk of bending/stretching their limbs too far. And again, only do this if it’s absolutely necessary and all other options have been exhausted.
If the person is stimming, making loud noises, sobbing, screaming, and so on: Do not restrain the person, try to stop them from stimming, or try to stop them from making noise. As long as they’re physically safe, this needs to be allowed because it’s the only way for the energy of the meltdown to be released. If they’re screaming and it hurts your ears, put in earplugs to meet your own sensory needs. The truth is that there’s almost always nothing you can do to stop this aspect of a meltdown. All you can do is provide sensory tools, move the person to a safer and quieter location, and wait for it to pass.
Now, here are some reminders about meltdowns:
They are neurological events that are beyond the person’s control
Becoming angry at a person who’s having a meltdown will not help
Meltdowns are caused by a buildup of overwhelming stimuli, not just one tiny thing
They can be triggered more easily if the person is hungry or has low blood sugar (so if a person is getting cranky or seems like they might enter a meltdown, try to get them to eat something)
Every autistic person is different, which means that all of our meltdowns look different and all of us need different things when we’re being helped
You should talk to your autistic friends or relatives about how to help them during a meltdown when they’re in a calm and regulated state. If you can’t talk to the person, you can ask their caregivers what things tend to help the most
Meltdowns often require a period of recovery and after-care. Make sure that the person is safe and comfortable as they recover
While there are lots of things you can do to mitigate the chances of a meltdown happening, sometimes they just can’t be prevented. That’s okay, and it’s something you can prepare for
Communication is key when caring for someone who’s having a meltdown. Let them know what you’re doing and why, ask simple questions when needed, and listen when they communicate with you
What works during one meltdown might not work during the next one. Try to be flexible and ready to adapt as needed, because every situation is different
It’s okay if you don’t get everything right. Situations like these are stressful and hard for everyone involved, so don’t worry about doing things perfectly. All that matters is that you’re trying your best
This is all I have to say for now, but there’s a lot that I’m forgetting about or just haven’t included because it would make the post too long.
If you have any questions about autism that you want answered quickly and you’re willing to pay me a small amount (starting at $3) via Venmo or PayPal, you can email your questions to me at [email protected] and I’ll get back to you with a detailed answer (and payment information) as soon as possible. This is something I’m starting as I expand the consulting side of my advocacy work. Thank you for your support!
An examination of Yale’s defensive statement, released after public outcry over their study on autistic toddlers.
On December 6th, 2020, a study conducted by three researchers from Yale University’s Child Study Center was published in the Official Journal of the International Society for Autism Research. It’s called “Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers With Autism Spectrum Disorder.” (https://europepmc.org/article/med/33283976) It is a peer-reviewed study, and it was approved by Yale’s Institutional Review Board.
The goal of the study was to measure autistic toddlers’ fear responses, in order to compare their emotional reactivity to that of neurotypical toddlers. The idea was that this could give some insight into how anxiety and depression develop in autistic people later in life. That’s a decent goal, but those insights could have been sought in much better ways, and without conflating autism with mood disorders (suggesting that autism itself requires treatment, as the authors of this study did).
As it was, the authors ended up conducting a study in which toddlers (42 autistic and 22 neurotypical) endured 10 trials of frightening stimuli to measure their fear responses. The methodology was based on the Lab-TAB - Locomotor Version, which is a standardized method of measuring the general temperament of young children.
In other studies (1,2) that use some variation of Lab-TABtechniques, the stimuli used to induce fear include a mechanical toy dog, and a toy robot. In those studies, none of the fear-inducing stimuli were introduced for more than three trials, and the durations of those trials were significantly shorter (15 seconds and ~10-30 seconds respectively, compared to 60 seconds in the Yale study). In the Yale study, not only did the toddlers endure 10 trials each, but the stimuli used were much more frightening.
From Yale’s study:
“TheStranger probe involved a female stranger wearing dark clothing, a hat, and sunglasses entering the room, approaching the child, and leaning toward the child for approximately 3 s (one trial). The Objects condition included Spider (large mechanical spider crawling toward the child, three trials) and Dinosaur (mechanical dinosaur with red light-up eyes approaching the child, three trials).Masks involved a female stranger dressed in dark clothes and wearing three grotesque masks in succession (e.g. vampire, Star Wars character) entering the room briefly and maintaining an approximate 1.5-m distance from the child (three trials).”
“Each probe lasted approximately 60 s with the effective exposure to threat time of approximately 30 s. Breaks were instituted between each probe, with a minimum of 30 s and an average of 75 s (SD = 36 s) needed to ensure that the child’s affect returned to neutral before proceeding to the next probe.”
So, ten trials. Assuming that “trial” means “repetition of the probe,” each one lasted around 60 seconds. Since 60 seconds is one minute, that’s ten minutes of exposure to threat; five minutes if we’re being conservative and going with their estimation of 30 seconds of effective exposure. There was an average of 75 seconds between each trial, however. So that’s 9x75, which adds 675 more seconds to the total time of the experiment. 675 seconds is 11.25 minutes. Add that to the previously calculated ten minutes, and that brings the total time of the experiment to around twenty-one minutes.
1. “The events used to elicit emotional responses were very brief [and] had low intensity.”
Based on my calculations, the combined amount of time that the kids were exposed to the events was 5 to 10 minutes. That’s not brief compared to other studies measuring similar things. And surely a large mechanical spider, a dinosaur with red eyes, and a vampire are much more intense stimuli than a mechanical dog?
2. “[The events] were interspersed with playtime, and mirrored what the children might encounter in the real world. For example, a Halloween costume or a new mechanical toy.”
There is absolutely NO mention of playtime anywhere in this paper. Nothing. Not a word about it. The only thing that could be potentially be seen as playtime is the 30 to 75 seconds between trials. But really? There’s not even a mention of the kids being given toys between trials. All the study says is that they waited for the toddlers’ demeanor to become neutral again.
As for the “Halloween costume” and “mechanical toy” euphemisms here: the study literally says “grotesque masks.” Grotesque. And “toy” sure is an interesting way to say “large mechanical spider crawling toward the child.” We don’t have photographs of the masks or toys used in this study, but from the way they were described in the paper itself, the words “Halloween” and “toy” put a much too positive spin on things.
3. “The entire task reported on in the paper lasted approximately two minutes with several additional minutes for breaks and transitions.”
This is the part that baffles me. Anyone can look at the paper and see where they wrote that each probe lasted for 60 seconds, and that there were 10 trials. Even if there had only been one 60-second trial of each probe, that still would have been 4 minutes (for the 4 probes), not 2 minutes.
What they might be doing here is only counting “effective exposure to threat” (30 seconds), and then multiplying that by 4 for each probe. That would be 2 minutes. But if that’s true, they’ve still failed to explicitly state how long each trial of each probe was. Because there were 10 trials, not 4. And why would a trial of the Stranger probe last 60 seconds, while a trial of the other probes would only last 20 seconds? (60 seconds divided by 3 trials). The math works out, yes. But if that’s the case, this is an issue that should have been more clearly addressed in the paper itself. Clarification on what’s meant by the terms “probe” and “trial,” in addition to information on the duration of each trial, should have been established. And, “effective exposure to threat time for each probe” (a subjective measure to begin with) is not even close to what’s implied by the phrase “the entire task.”
Here’s the last bit I want to touch on:
There is no mention of physiological responses in this study. According to what they wrote in the paper, the authors observed external behavior, not internal bodily changes. The toddlers were not hooked up to any sort of technology that would have measured their heart rate, breathing, etc.
And perhaps the mildly distressed children had an easy time calming down. But what about the trials that had to be terminated and excluded from the results due to “the child’s negative affect” or “parental noncompliance (i.e. parent interfering with probe administration)”? If they literally had to end trials because the kids were so upset, or the parents intervened to comfort their children, then how is it possible to say that “none” of the children experienced extreme negative emotions?
Yale’s statement is full of holes, and creates more questions than it answers. The autistic community is calling for full transparency on the methods used, an explanation of the reasons behind those choices, and detailed answers to our questions about the ethical legitimacy of what happened. Inquiries about the study should be directed to the authors at these two email addresses: [email protected], and [email protected].
The impersonation of disabled people for personal gain is a serious problem that needs to be addressed.
I am writing this post in lieu of two events: my witnessing of an interaction between a student who was faking a service dog and a university employee; and the release of Sia’s trailer for the film “Music.”
Those events may seem disconnected at first, as they did to me. But as I thought more deeply about both situations, something big stood out to me: in both cases, a nondisabled person was temporarily assuming the identity of a disabled person in order to generate some form of personal gain or profit.
I’ll go over the “service dog” interaction first, because it’s a story I haven’t told yet. Basically, last Tuesday I went into the Covid testing center on UVM’s campus. In line ahead of me was a fellow student who had a small lap dog on a leash. The dog was barking, yapping, running around, and jumping on the legs of workers at the testing center. It was incredibly disruptive, and honestly very irritating, especially since the student wasn’t doing anything to try and correct the dog’s behavior.
Nobody said anything to the student at first (the worker whose legs the dog jumped on didn’t even react), so I considered the possibility that pets were allowed in the building. The dog was so clearly not a service animal (bad behavior, lack of other identifying markers) that it just didn’t seem possible that people could notice and still do nothing to reprimand the student, if pets weren’t allowed in the building. But apparently someone eventually noticed, and called over an employee.
This was the conversation I observed between the student and the employee:
Employee: unless your dog is a service dog, it’s not allowed in the building. We don’t allow pets.
Student: oh I’m leaving anyway, so don’t worry about it.
Employee: okay but I’m just letting you know for future reference that unless your dog is like, a registered service dog, it’s not allowed in the building.
Student: she’s in training, does that count?
Employee: I don’t know the rules about being in training, I would have to ask, but-
Student: she’s also a registered therapy dog, if that helps.
Employee: I don’t know, I think it’s just service dogs but I’d have to check.
At this point in the conversation, I left the building. There were so many things wrong with this interaction, and there was so much ignorance on both sides, that I couldn’t handle it. I thought about going up to educate both of them, but that prospect was too overwhelming. I was obviously disabled at that moment, because I was using my forearm crutches. That made what I witnessed even more painful. This student felt comfortable impersonating someone like me, right in front of me.
And for those who aren’t aware of the laws around service dogs, here are all of the things that were wrong with that conversation:
1. In the United States, there is no such thing as a federal registry for service dogs. Organizations that claim to provide registration papers are fraudulent. So the employee was wrong to say that a service dog would have to be “registered.”
2.Legitimate service dogs (in training or not) can legally be kicked out of establishments if their behavior is disruptive (as this dog’s behavior was- barking and jumping on people), so the employee could have just told her to leave point blank.
3. Service dogs in training have full public access rights, but therapy dogs do not.An actual service dog handler would be aware of these laws and would not ask an employee questions about if they were allowed in the building or not. Additionally, this dog was clearly not being “trained” by the student in any way.
So from every available external indicator, this student was flustered when confronted about bringing her pet dog into the building, and therefore decided to pretend that she was disabled & had a service dog “in training.” The student benefited personally from implicitly lying about being disabled; avoiding the potential consequences of her actions by exploiting the ignorance and good nature of the employee.
Because disability is more fluid and often less obvious than other characteristics like skin color, body size, etc. it is easier for nondisabled people to impersonate us when it’s convenient or it benefits them in some way (with the assistance of plausible deniability).
Bring your pet dog into a building even though you’re not supposed to? It’s okay, just pretend to be disabled and say it’s a service dog. Want to make lots of money on a film about autism but can’t bother to spend time working on accommodating an autistic actor? It’s okay, just hire someone to pretend to be autistic instead. (/s)
The trouble with all of this is that disabled identity is being appropriated and used by nondisabled people to generate personal benefit and/or capital, all while actual disabled people remain marginalized. And the mis-appropriation of disabled identity creates false ideas in the public consciousness, about what disability is and how disabled people act.
People who fake having service dogs create situations in which actual handlers have trouble being taken seriously or gaining access to establishments. People who create films about the disabled experience without including disabled actors & writers create situations in which misconceptions and stereotypes about a certain disability are perpetuated and exaggerated.
The most disturbing thing about this dynamic is that disabled people are oppressed. It’s not like abled people are pretending to be us because they want to enjoy the sociocultural “benefits” of disabled life (there are none). We’re not an exalted category. We’re not nobles, or members of a high class. Rather, our lives and stories and meager legal protections are exploited by those who have no need to do so. Abled people are already advantaged, and they use our existence to further widen that gap in status.
I can’t stop being autistic when it’s convenient. I can’t stop being chronically ill when it’s convenient. I can’t stop having mobility issues when it’s convenient. This is my life every day. So to the student at the testing center, to Sia & Maddie Ziegler, and to every other abled person who’s put on a disabled persona: stop acting like this is your life when it’s not.
If you’re only paying attention to autistic people when we die, take a moment to think about why.
Three days ago, I made a Twitter/Instagram post about the death of an autistic boy named Dylan Freeman. You can go read the post on either of those platforms if you don’t already know what I’m talking about.
At the time I’m writing this, the post has received over 40,000 likes on Instagram, and it has been viewed by over 220,000 people. That’s more engagement than any other post I’ve made to date, and quite honestly, I feel weird about it. This is what the top of the insights page looks like:
So… yeah. That’s a lot of people.
I wrote that Twitter thread because I wanted to provide a rebuttal to the narrative that Dylan’s life didn’t matter, or that he was burdensome & therefore his death was “understandable.”
And in some ways I’m glad that it’s being shared so widely. Because it spreads the message that autistic people are not subhuman, and that we have the right to live in this world. It also directs more traffic to our account, so more people follow us and more people learn about autism.
But I keep asking myself these questions:
Why did a post about an autistic child being killed generate more engagement than any of the other educational posts I’ve made?
Whydo people pay attention to autistic people when we die, but ignore our lives and advocacy work?
A little over 600 people followed our account after seeing (and presumably liking) the post. But according to the insights page, 91% of people who saw the post weren’t following us. So what about the other ~20,000 or more people who liked the post but didn’t follow us because of it? Who liked it, but never visited our profile or read any of our other posts?
All of that bothers me. Not because it’s bad for our account, or bad for autistic people, or bad to educate others about the hardship that autistic people face in the world. It bothers me because a post about a violent, heartbreaking event, has surpassed other posts we’ve made that can help prevent that same type of violence and heartbreak.
That’s the important takeaway here.
If y’all really care about autistic people and you want us to stop being murdered, you need to start amplifying our voices and paying attention to our lives, not just our deaths.
That means not just following us, but following people like Lydia X.Z. Brown, Julia Bascom, Ari Ne’eman, Morénike Giwa Onaiwu, Tiffany Hammond (@fidgets.and.fries), Tee (@unnmasked), and many more.
Autistic people often have altered body language and patterns of movement.
This is due to a variety of factors, which include inherent differences in proprioception and sensory processing, and frequent comorbid dyspraxia, hypermobility, etc.
Here are some common features of autistic body language (not universal, just common):
walking without swinging the arms
raptor hands
stiff, hunched, or otherwise unusual posture
an uneven gait
walking with flat feet (meaning the front of the foot hits the ground at the same time or before the heel. It’s normal for the heel to hit the ground first)
toe walking
frequently not making eye contact
often having blank or unusual facial expressions
covering/plugging ears, eyes, nose, etc. to block out sensory input
sitting in unusual positions
clumsiness and a tendency to bump into things, step on people’s feet without noticing, accidentally get too close to people, etc.
stimming! This could mean rocking back and forth, flapping hands, twirling hair, flicking fingers, etc.
trouble with coordination, which might lead to some difficulties playing sports or mimicking the physical movements of other people
There are probably some things I’m forgetting, and not everything on this list will apply to every autistic person. Some of us may only display a few of these traits, or we might express these traits differently depending on the circumstances.
Now I’m going to include some illustrations done by Miss Luna Rose for WikiHow, which demonstrate autistic body language:
The person on the left is autistic. They are sitting in an unusual position, and are stimming with their hands.
Both of these people are autistic. Neither of them are making eye contact, and both of them are stimming and expressing themselves with their hands.
This person is autistic. They are plugging their ears to block out auditory input.
The person on the right is autistic. They are looking away/avoiding eye contact to block out sensory input.
This person is autistic. They are stimming with their hands, with their eyes closed, to regulate sensory input and/or express emotion.
Hopefully this list of traits, coupled with these illustrations, help you to recognize autistic body language in other people and yourself :)
I was reading through @/ theautisticlife’s Instagram stories earlier and was really struck by her writing on authenticity. Many autistic people feel the need to mask, and hide parts of themselves that are incongruent with dominant social norms. This makes it easier to be accepted by neurotypicals, but it comes at a great cost to their mental health.
On the other hand, some autistic people never really mask that much. We’re true to ourselves in the majority of scenarios, regardless of what other people might think. I fall into this category, and it made my life harder throughout elementary, middle, and high school.
My authenticity was off-putting and disorienting to many classmates, who weren’t used to their peers being so sure of themselves and what they believed. As a result, I was informed many times that certain people “didn’t like me,” but they were never able to pinpoint specific reasons. I never did anything particularly mean, rude, or insulting to others. I wasn’t selfish, or manipulative, or aggressive. I just did things that I felt like doing, wore things I felt like wearing, and said things without worrying too much about what others would think. And for some reason, that scared people.
Sometimes peers would make comments about my appearance, mannerisms, etc. Or they would ask me why I was doing something. For example, I stopped shaving my legs and armpits in freshman year of high school, because the only reason AFAB people are taught to is because of a capitalist ploy by razor companies. There’s nothing “unhygienic” about it at all. So once I learned that, I just stopped shaving, because it didn’t make sense and I didn’t want to. But when I changed for gym class in the locker room, sometimes people would make comments: “Your legs are hairy,” and “Your armpits aren’t shaved.” My reply was always, “I know.”
Funnily enough, some of those people followed suit in later years, once they realized the same things I had realized prior, and decided that they also didn’t care much for capitalist beauty standards.I was just ahead of the curve.
I’ve always been myself. I don’t compromise my values for the acceptance of others. If something doesn’t feel right, I don’t do it. If something is morally wrong, I tell people what I think about it. This is what has caused people to dislike me in the past: my authenticity threatens the validity of their conformity.
People follow along with the crowd because it’s safer, because they know they’ll be protected by their peers. But what if the crowd is doing something wrong? What if the crowd is harming others? People don’t want to know, because it calls into question their reasons for following along with the group in the first place. It makes them feel like their safety net might collapse. It forces them to challenge their worldview.
One of the most interesting stories I’ve ever experienced because of this, started with a fraught invitation to a Christmas party in 8th grade.
I was friends with two people in the group, and friendly acquaintances with most. One of the people I was friends with invited me to the group’s annual Christmas party, but apparently didn’t tell the others that she had invited me until about two weeks beforehand. When she informed the rest of the group that she had invited me, all hell broke loose in their groupchat.
Most people were neutral on the subject, but two people in particular were vehemently opposed to my presence. One of them even went so far as to say that she hated me. Reasons cited by the two of them were that I was weird, that I didn’t get along with other people (which was a strange thing to say, given that they barely knew me), that I would ruin the party, and that I didn’t deserve to come.
You can imagine how I felt when the people I was friends with sent me screenshots of that conversation. It was deeply confusing and hurtful to me, and it only exacerbated my already prevalent anxiety about what others were saying about me behind my back. I spent the night crying about it to my mom, and she let me stay home from school the next day.
After school on the following day, I started to get texts from people in that friend group. They were worried about me, and wanted to make sure I was okay. I told them I was fine, that I took the day off. Then, I got a text from the girl who had said she hated me only 24 hours prior.
She apologized for everything she had said, and told me she had been worried sick all day when she realized I wasn’t at school. Then, she said something interesting. She told me that she didn’t actually dislike me, but rather that she felt threatened by me because I’m always so true to who I am. She said, “You’re a better person than me,” and explained that because of that she felt insecure, and lashed out. I told her that I understood, and wouldn’t hold the incident against her. And I thanked her for being honest with me.
I think that’s one of the most important, illuminating conversations I’ve ever had in my life. And it fits in perfectly with everything I’ve discussed so far in this post. One of the main reasons autistic people are bullied, ostracized, excluded, etc. is because we amplify other people’s own insecurities. Our honest, unassuming demeanor puts a mirror in their faces and forces them to confront who they are, what they think, and how they truly feel. It makes people call into question the things they’ve been taught to think and feel, and opens up the possibility for more authentic ways of relating to others. To neurotypical middle schoolers especially, that prospect is frightening.
I think that’s why, as my peers have gotten older and started developing a stronger sense of who they are, it’s gotten much easier for me to interact with them. Because now that they’re secure in themselves, they have a much greater capacity to understand that my existence isn’t a threat to their personal lives. And they can actually appreciate my personality, without being scared off by my strong passions and interests.
I’m sure I’ll always face some challenges of this sort, given that social cohesion is an important aspect of the way neurotypicals operate in the world. But luckily I’ve been able to make friends with other autistic and neurodivergent people, who understand me and support me in all my endeavors. I used to wonder if I’d ever be able to make lasting friendships, where the other people truly care about me and love me for exactly who I am. Now I know the answer: yes.
If you’re someone who experiences panic attacks, you need to check out the app PanicMechanic
This isn’t a paid promotional thing, by the way. I just think it’s important that y’all know about this app, because it’s been immensely helpful to me. Also before you start reading know that the first two paragraphs are me describing my own panic attacks, so content warning for physical sickness and weight loss.
I’m someone who experiences frequent, severe panic attacks. Before I got this app and started communicating about my needs to the people closest to me, my panic attacks would usually make me throw up. At one point last year, my anxiety was so severe that I could barely eat, and I threw up everything I ate. I was throwing up every single day, multiple times a day. It was absolutely miserable. During that time, I lost 5 pounds in 5 days (and I’m thin to begin with, so it was a big deal).
I still struggled with this up until about a month ago, even though I take two different anxiety meds- one of which is an anti-nausea appetite stimulant (as a side effect). It didn’t matter what my meds were, how much deep breathing I did, or how many times I grounded myself by naming things I could sense. Nothing seemed to work. My autonomic nervous system is explosively hypersensitive, and my fight-or-flight can be set off by just about anything. Once the chain reaction has started, it’s impossible to stop.
Or so I thought. Around a month ago, my mom walked into my room with the latest copy of the University of Vermont’s magazine. In it was an article about an app called PanicMechanic, which had been developed by people in the engineering department at UVM. It uses a form of biofeedback, by tapping into your phone’s camera. You put your finger over the lens and the app measures your heart rate.
Then, the app cycles through a series of questions. It asks you what caused the panic attack (you can add custom triggers), then it asks you what your anxiety level is, on a scale from 1 to 10. It might also ask you questions about your sleep quality, food consumption, exercise levels, etc. Then, it will tell you approximately how long is left until your panic attack ends (based on previously recorded ones). After that, it goes back to your heart rate. The screens keep cycling through, with your heart rate graph being shown each time, until you press “Finish Attack” in the upper righthand corner.
The app sounds simple, and it is. But it’s fantastically effective at facilitating mindfulness, and a sense of control over the situation. Before I started using it, I had a really hard time getting out of my head and staying focused on my immediate reality. Now, it’s way easier to regain control of my body and my breathing. My panic attacks used to last anywhere from 5 to 30 minutes. Now, they only last 5 to 7 minutes. And the best part? I don’t throw up anymore!
The app is free to download on iPhones, and soon it will be available on Androids. There’s a 7 day free trial, so you can see if it works for you before paying the yearly fee (which I believe is around $50 annually, or about $4 a month). That’s extremely cheap compared to the usual costs of therapy and medication.
Since I’ve been using the app, I’ve felt an enormous change in my ability to gain control of anxiety. The fact that it’s so easily accessible in the moment makes it that much more effective. I really hope this helps some of you!
And when I say that, I don’t really mean our “sense of humor.” Because a lot of the time, it’s not intentional. I mean the way we say things that aren’t meant to be funny, but end up being hilarious.
I saw a post a while back that said “the greatest superpower my autism has given me is accidental big dick energy,” and it’s absolutely true.
Because we don’t pick up on NT social cues as easily, we have highly original thoughts, and we have a tendency to be honest and direct, we end up saying some pretty amusing things.
For example, one time I had friends over for my birthday. One of them had gotten me an ugly graphic T-shirt, whereas the others had given me nicer presents. The friend said, “Now I feel bad, all I got you was this shitty T-shirt.” My response was, “Well, yeah, but-” and then I couldn’t say the rest of the sentence because all of my friends were absolutely beside themselves with laughter. I started laughing too because I realized how much of a blunt, autistic response it was.
A neurotypical might have said something like “It’s not a shitty T-shirt, don’t say that! I really like it.” But it didn’t even cross my mind to say a white lie. Because it’s true, it was a terrible gift. And since I’m autistic, I just acknowledged the truth of my friend’s statement. But I also didn’t care about the gift, I wasn’t insulted by it, and I thought the whole situation was funny.
That’s one of the things I love about being autistic. I’m funny without meaning to be, and luckily my friends appreciate me for it.
So-called “high functioning” autistic people have meltdowns, too.
There seems to be some sort of notion in the NT, parent-dominated autism sphere, that so-called “high functioning” autistics (read: conventionally intelligent autistic people who can speak) don’t have meltdowns like the kids who are “really” autistic. But if those parents were to dig a little deeper, I’m sure they’d find that there’s more to autistic self-advocates than meets the eye. Just because we don’t put our most difficult moments on display constantly, doesn’t mean those moments don’t exist.
Regardless of the fact that nobody is owed any piece of my story, it’s important to me to share what my meltdowns were like, from an insider’s perspective. This aspect of my childhood is what led to me getting diagnosed at age 8, which is early considering that I’m AFAB. So here I’m going to share something I wrote in 7th grade and revised today, about a meltdown I had while I was still in elementary school. I go into a lot of detail and the entire situation was very distressing, so if you aren’t in the headspace to read this please don’t.
Here it is:
My head is spinning, on constant rewind and replay. The argument comes in flashes, with angry faces and ears that never listen to me. I’m dizzy and nauseous and I feel my throat tighten as I start to cry. I don’t want to leave the living room and I don’t want to be touched. My dad yells, his voice unbearably loud. He says I have to go to my room, and threatens to carry me if I don’t. It doesn’t matter that I’m stuck on the couch, that I can’t move. He starts counting backwards from three.
“Three… two… one… okay! That was your choice.”
“No!” I yell, “No! No! No!”
But I know what comes next. He lunges towards the sofa and grabs me roughly by the armpits as I claw at the fabric and try to hold on. My hands slip, and he throws me over his shoulder. I scream, my voice tearing at my throat. I bite his shoulder, scratch his back, and try my best to knee him in the ribs. I twist and writhe in an attempt to escape his firm grasp. But he manages to hold onto my 10-year-old limbs as he stumbles down the hallway, then flings me onto my bedroom floor.
My spine slams into the hard linoleum tiles. Pain surges through my back and out through the top of my head. I yell, tears streaming down my face. Dad tries to leave me there on the ground, tries to slam the door behind him. I lunge at the doorknob as he leaves, twisting it to try and keep the door open, but he is stronger and locks it before I escape. Another piercing wail reverberates around the small room. I’m hurting my own ears, but I can’t stop. I hear my dad yell to my mom,
“It’s your turn! I can’t do this anymore!”
I throw my body at the door, ramming my shoulder and hip into it. I accomplish nothing, so I lay down and prepare my legs. Feet on white paint, I kick violently at the center of the door. This is a routine I’ve gotten used to over time. With my back on the cold tile floor, my legs battle with the wood. I cry in outrage, I shriek and sob, aware of the situation but unable to stop myself. I hear my mother approaching. She opens the door a crack and slips in, quickly slamming the door behind her. I leap at the handle and try to twist it open, but she grabs my wrists tightly. The blanket she had in her hands falls to the floor.
“Calm. down. I’m going to wrap you, don’t try to get away because the door is locked.”
She moves to the center of my bedroom and spreads the blanket out on the floor. She calls my father in for backup.
“Honey! Get in here! I need you to hold her down so that I can wrap her!”
He rushes into the room, and slams the door behind him. It sounds like a gunshot. They’re here to trap me like an animal, with earplugs in so they don’t have to feel the weight of my screams. I scurry to the farthest corner of the room and curl into a ball on the floor, still sobbing loudly. Don’t touch me. Don’t touch me. Don’t touch me. My dad yanks me off of the ground, throwing me unceremoniously onto the edge of the blanket in the middle of the floor. My back will be bruised tomorrow.
Mucus drips from my nose and onto his exposed arm. He attempts to stretch out my legs, but I bend and twist and press back against his force. My mom tears at my arms, trying to stretch them out by my sides, lay me out flat on the edge of the blanket. After minutes of struggle, I accidentally fall into a position where they can do what they wish. My mother seizes the opportunity, and throws half of the blanket over me while my dad keeps his knees on my legs and hands on my wrists. My throat is raw. I look at my parents through my tears, the water blurring and distorting their image. I can see that they are just as sweaty as I am. I try to fight back but it’s not enough as they roll my body in the blanket, my face grazing the floor with each rotation. My arms are pinned to my sides, my legs can’t bend, and I can’t turn my head so I lay there face down. Mom sits on my back and dad sits on my legs, and I feel the air leaving my lungs. I gasp and choke and tell them I can’t breathe, but they don’t listen. They never listen.
They won’t release me until I fall silent, but I do not close my mouth. My rage increases with my guilt. I won’t let them squeeze my breath away, but it must be my fault that they’re trying to. I wish I was good but they just don’t listen. With these thoughts, in a maddening burst of emotion, I tear myself out of the suffocating blanket. My parents both yell, try to keep my arms down and lungs compressed, but suddenly I’m too strong for them. My ears collapse inside themselves as I stumble to the ladder of my loft bed. They can’t reach me up there. I climb as I cry, crawl into the blankets and grab my water bottle. I drink to ease my pounding headache, the popped blood vessels in my face. Water will quench the angry fire.
…
Meltdowns like this didn’t just happen every once in a while. When I was a young child, they happened almost daily. And as I got older, they happened once or twice a week. They began going away when I started taking anxiety medication at age 12. But they still happen sometimes. The last massive one (like this narrative describes) happened when I was around 16- two years ago. But often, they were worse. I would break things, cut things, and smash things. I would threaten to hit my parents with metal objects if they got any closer to me. I did those things because I felt I had no other way to get my point across, since they were so dismissive of my boundaries and needs.
These experiences were very traumatic to me, mostly because of the way my parents always handled the situation- with anger, force, and disrespect. We’ve discussed this recently and they both understand how harmful their actions were, and feel remorseful. Regardless, it’s important for me to talk about this so that other parents of autistic kids don’t make the same mistakes my parents did.
To all the other autistic people who have gone through similar experiences during meltdowns: I see you. I am you. I’m with you.
Dear Public School: an open letter from an autistic student in the graduating class of 2020
Let me preface this by saying that in many ways, I suspect that my experience with public school was no different than many autistic students’ experiences in private schools, charter schools, and so on. That’s because ableism is pervasive in global society, and it affects every aspect of our lives. But here I have written my own experiences in public high school.
I can’t count the number of times I heard students use slurs such as r*tarded, the n-word, f*g, d*ke, etc. By far the most common slur used was r*tarded, which was often used within earshot of teachers who usually said nothing. Sometimes people would even use the words “sped” and “autistic” as insults, as if my educational accommodations and neurology were something to be weaponized to make others feel terrible about themselves. This common cocktail of slurs made me feel extremely unsafe.
Sometimes I spoke up about it, but most of the time I stayed quiet, because I just wanted to get through my day without having to argue with people about my humanity. Even students who were generally pretty socially aware and vocally supported LGBT people and people of color, often used the r-slur. And it hurt way more when I saw that type of behavior from those people, who I thought I could trust.
In my experience, ableism against autistic and other developmentally disabled people is probably the most prevalent form of dehumanization in the school system. It’s so ubiquitous that some people don’t even know what you’re talking about when you refer to the word r*tarded as “the r-word.” It’s so unquestioned that entire classes of people would laugh and crack jokes about autistic students who were having meltdowns that you could hear down the hallway.
I know, because I’ve been in those classes, and tried not to cry as everyone around me started laughing at another autistic person’s pain. It’s really hard to describe how humiliating that was. Because I’ve had meltdowns just like the ones other students were having, which means that my classmates might as well have been laughing and cracking jokes about me, in my most vulnerable moments.
One day at lunch, I overheard another autistic student talking to his aide about how his gym clothes had been thrown into the locker room toilet, and he had been shoved and choked by other boys as he tried to get his clothes out. His aide was aghast, and asked if this had been brought up to the administration. The student told her that he had talked to the office about these same students many times before, but it never seemed to change anything.
But these types of overt verbal and physical violence were not the only things autistic students had to face. We also had to deal with extreme levels of sensory overload, caused by events that were not planned without our needs in mind. Even if prom hadn’t been canceled this year due to coronavirus, I still wouldn’t have been able to go. The music would have been too loud and overwhelming, even with earplugs. I nearly cried at way too many pep rallies to count, from the bone-shattering vibrations of speakers blaring “upbeat” music, combined with hundreds of shrieking, shouting students. It’s absolutely horrible to have to endure severe physical pain just to be socially included. I spent most of my time at pep rallies plugging my ears with my hands.
My public school did a pretty terrible job at educating students about autism and other disabilities. Autism was only brought up once in a blue moon, and when it did get brought up, it was framed as if it’s some sort of disease that requires “awareness” and a “cure.” The problem was that barely anyone really understood what autism is, teachers included. On the very rare occasions that it was brought up, I was usually the only autistic person in a class full of people talking about it, and I had to correct both students and teachers on certain fundamental facts.
Despite the creation of an “Autism Awareness Week” my freshman year, which was obviously organized by non-autistic people (as evidenced by the plastering of puzzle pieces all over people’s lockers, and the “facts” from Autism Speaks that were read over the loudspeaker), the bullying and abuse didn’t stop. Many of the same people who purchased the blue “autism awareness” ribbons the school sold that week and stuck them on their backpacks, also frequently said the r-slur and made fun of autistic students for having meltdowns or acting in unconventional ways. That’s because “awareness” without acceptance accomplishes absolutely nothing.
If public schools really want to do right by autistic students, they can start by getting information from the Autistic Self Advocacy Network, not Autism Speaks. Then, districts can teach students about how autistic people perceive the world, and encourage autistic students to give talks and educate their classmates about their experiences. Humanizing those who are different, and inviting students to explore radically different ways of perceiving the world, is honestly what education should be about.
Schools need to commit themselves to active inclusion, which means taking down barriers to access like excessively loud music at events. Autistic students shouldn’t have to ask our schools to accommodate our sensory needs. That should be something that is granted with no questions asked.I assure you that no neurotypical student actually needs the music at school events to be so loud that it will damage their eardrums. Yet, for some strange reason, neurotypical preferences tend to override autistic needs. That has to change.
No person should have to go through the routine, systematic humiliation and exclusion that I did as a student. And my experience in high school wasn’t nearly as bad as many other autistic people’s. Other autistic students got severely bullied, even physically assaulted. There is only one word to describe all of this:
Autism and Selective Mutism: what’s the overlap and what are the differences?
There are a lot of autistic people who have been diagnosed and/or treated for Selective Mutism, even though currently under the DSM-5 the two conditions cannot be diagnosed in the same person. The ICD-10 may have a different classification system, though I’m not entirely sure. Also, while many feel that the name Selective Mutism is inaccurate (and many prefer the term Situational Mutism), since that is the official diagnostic term it is what I will be using here.
Many (if not most) autistic people experience loss of speech in certain situations or for certain periods of time. But what’s the difference between nonverbal episodes, which are common in autistic people, and Selective Mutism?
To know that, we have to know the characteristics of each situation:
Selective Mutism (SM) is an anxiety disorder that results in an inability to speak in certain social situations, or to certain people in specific circumstances, in people who are otherwise capable of producing speech. Common places that people with SM lose the ability to speak are at school, at parks, at parties, etc. Almost all people with SM also have Social Anxiety Disorder. One common fear that results in an inability to speak in peoplr with SM is fear of judgement. People with SM aren’t just “choosing not to speak.” Their ability to speak gets completely shut off by social anxiety, and it’s not something they can control. SM is most frequently diagnosed in children and teenagers, but adults can have it too.
Autistic people, on the other hand, often lose the ability to speak when we are overstimulated by any variety of stimuli, or when we enter shutdowns, meltdowns, and burnout. Anxiety can be one emotion or circumstance that results in us entering a shutdown/meltdown state, or even burnout. This may be why it’s often very difficult to tease apart autism from SM. Whereas anxiety is the core cause of SM, the reasons that autistic people lose speech are often a lot more complicated and varied.
Here’s an incomplete list of reasons or circumstances that might cause an autistic person who is normally capable of speaking to lose speech:
Overstimulation from external sensory stimuli like noises, lights, and motion
Extreme emotions like frustration or sadness
Anxiety (because of social circumstances or for other reasons)
Overstimulation from internal sensory stimuli like pain, hunger, or nausea
Being in an unpredictable and/or chaotic situation, which may provoke sensory overload and anxiety
All of the things I listed above can also cause meltdowns and shutdowns, which are the most common scenarios where autistic people lose speech. However, sometimes autistic people lose the ability to speak for no apparent reason at all. We might feel perfectly fine otherwise, and yet be unable to talk. One possible explanation for this is that sometimes autistic people’s brains shut off the ability to speak in order to conserve energy, because it requires a lot of effort to coordinate all of the motor movements required to vocally articulate words.
Given this, an autistic person losing speech might appear very similar to someone with SM on the surface, but the cause of the mutism itself is quite different. Autistic people might lose speech at school, in public, at amusement parks, at dances, at parties, etc. not always because we’re anxious per se, but because we’re overstimulated by everything in our environment. The overstimulation can cause feelings of anxiety and even panic, but this anxiety is often secondary to the primary experience of overstimulation.
Now, there are probably a decent number of autistic people who also have true SM, which is a social anxiety disorder. But it’s also probably the case for many autistic people diagnosed with SM, that the cause of their mutism isn’t necessarily the same as it is for other people who carry the same diagnosis.
Greta Thunberg has been very open about her diagnosis of SM, and her experiences with losing speech. She has discussed the few years where she stopped eating and stopped talking, which to me seems like it very well could have been a period of autistic burnout. She has also talked about her experiences with overstimulation, and how when she gets too overwhelmed by sensory stimuli she enters a shutdown state and loses the ability to speak.
To me, it seems that Greta’s SM is very intimately connected with her autism, which is likely true of anyone with both diagnoses, and especially true for autistic people who also have Social Anxiety Disorder. Autistic people already have difficulty with socializing, processing information, and coordinating the movements required for speech. Add on anxiety and fear of judgement as a result of bullying and mistreatment, and it’s almost inevitable that we’ll end up having trouble speaking in certain circumstances.
Ultimately, I’m not sure whether or not it’s appropriate for autistic people to be diagnosed with Selective Mutism. The DSM-5 seems to think that it makes more sense to keep the diagnoses separate, because autistic people’s unique struggles with speech shouldn’t be confused with a very specific anxiety disorder that frequently affects non-autistic and non-neurodivergent people.
If that’s the case, I think the autistic community should start brainstorming words and terms to describe our unique experiences with losing speech, that aren’t tied up with Selective Mutism but that respect the lived experiences of nonspeaking autistics. I think “nonverbal episode” is an adequate working term, but I know that many nonspeaking autistic people have expressed that the use of the words “nonspeaking” and “nonverbal” by autistic people who usually can speak, diminishes the lived experiences of autistic people who are fully unable to speak under any circumstances.
What I’ve seen is that generally, the word “nonspeaking” or “nonverbal” is used to refer to autistic people who are completely unable to speak due to significant motor skills differences, but when those words are attached to the word “episode” they refer to a specific period of time or circumstance in which an autistic person who is usually capable of speaking becomes unable to speak. I wish there was a word to describe just that second experience, without using the words “nonspeaking” or “nonverbal.” If anyone has any ideas, let me know in the comments.
I hope this post has provided some clarity on the overlap and differences between autism and Selective Mutism :)
There is no singular answer to this question. When I volunteered at a school for autistic and otherwise disabled students, each teacher and aide was different. When I volunteered at an ARC adult daycare center, the staff were equally varied in their treatment of the individuals there. But there were some common threads I noticed across both locations, regardless of how different they were on the surface. And there were common threads that tied the teachers & staff together, too.
For the purposes of this post, I will be discussing my observations about the school, not the ARC adult daycare center. Also, before you continue reading, you should know that this essay will discuss suicidal ideation and sexual actions. Now, let’s continue:
Something very interesting I noticed was that the only white man I ever interacted with was the principal of the school. I’m sure there were a few white male teachers, but I never met any. The people who were with me in the aftercare classroom were all women and/or POC. This demographic data didn’t match my own school, which was only 10 minutes away.My own school had extremely few teachers of color, and had a decent amount of white male teachers. But looking back, I recall that the many of the one-on-one aides for the special education students at my school were people of color.
I’m pointing these things out because usually, jobs that women and/or POC do are systemically undervalued in society. Teaching is still seen as “women’s work,” because it’s associated with caretaking. The association with caretaking gets less intense as kids get older, which is why there are a heck of a lot more male secondary school teachers than there are male elementary school teachers. According to the National Center for Education Statistics (in the US), only 11% of elementary school teachers are male, whereas 36% of secondary school teachers are.
When you look at the stats on special education teachers as a whole, 86.3% are female (meaning that 13.7% are male). Despite being significantly outnumbered, the average salary for a male special education teacher is $53,855, which is $8,393 more than the average female salary of $45,462.
Then, looking at the statistics for one-on-one aides, things get even more stark. Almost 89% of paraprofessionals are female, and the average female classroom aide makes only $19,927 per year, compared to male classroom aides who make $26,453 per year. Referring to the previous paragraph, notice the significant gap between what the teachers are paid, versus what the aides are paid. There are also many more POC aides than POC special education teachers. Only 16.8% of special education teachers are POC, whereas 24.3% of aides are POC. (I did those calculations based on US census bureau data)
Okay, so we’ve discussed the demographics, the pay gaps, and the racial disparities. Keep in mind that the vast majority of people in these jobs are also neurotypical, and that all of the teachers and aides where I volunteered were neurotypical as well. Now, I’m going to discuss the pervasive ableism and problematic attitudes that existed at the school, keeping in mind all of the sociological factors that have contributed to these people feeling that they are not valued in society for the work that they do.
The culture of the school I worked at was what one might expect. The teachers mostly cared about the students, and were pleasant to talk to. But there were some things I noticed that weren’t particularly pleasant or enjoyable:
Most of the time, the teachers and aides talked about the students in the 3rd person, as if they weren’t in the room. Even if the students in question could speak clearly, they were still treated as though they could not contribute any meaningful input to a conversation. The problem was even worse for students who couldn’t speak. They were all referred to in the 3rd person, discussed by staff, and speculated about without any regard for the fact that they probably understood everything that was being said about them. I tried my very best not to engage in this behavior when spoken to (teachers would try to involve me in their conversations about the students), but in order to mask and protect my position as a volunteer, I couldn’t speak up about the issue or do anything to stop it.
Many of the teachers obviously didn’t want to be there, and didn’t like their jobs. There was one teacher in particular, I don’t remember her name, who would even “joke” about committing suicide right after a student did something mildly disruptive. She would vocally express (right in front of the students!) how much she hated her job, hated herself, and hated her life. She was at least 50 years old, and often turned to me (I was only 17 at the time) to vent and rant in distress about how awful everything was and how much she wished for retirement. This was incredibly uncomfortable to me, and probably very damaging to the students, but it was also something I couldn’t really do anything about given my unofficial status at the school.
Students were not given any intellectually stimulating activities to do in the after school program. This was a particular problem for one autistic student named Matt, who I could tell was bored out of his mind. To quell his boredom, he peeled the paper label off of crayons, peeled the name stickers off of other students’ desks, ripped up pieces of construction paper, stole food from the snack bin and shoveled it into his mouth when the teachers weren’t paying close attention, and masturbated in the middle of the classroom. That last part is something nobody had prepared me for when I started volunteering there. In fact, it seems to be something nobody in the special education world talks about at all. The only other person I’ve talked to about it until now is Laurel. And yes, it caught me off guard. But I very easily understood why all of this was happening- Matt was seeking intense sensory input to replace his boredom.
Sometimes his aide gave him picture books to read out loud, which he did. But when he was finished and said “Done!” his aide just told him to read it again. The only times I had seen him truly happy and engaged were the times that he was allowed to play the keyboard. Matt was an amazingly talented musical artist. I was shocked when I first heard him play- not because he’s autistic, but because the composition he was creating was worthy of being played in Carnegie Hall. During the days he had access to the keyboard, his sensory seeking and anxious behaviors significantly decreased. He sang along to the tune of the songs he created (they were extremely catchy), and chewed on a red chewy that was clipped to his shirt. He didn’t bite his hands, rip up his gloves, or ask to “go to the bathroom.”
Yet, he usually wasn’t allowed to use the keyboard. The reason I overheard was that the music teacher was afraid he would break it. And yes, he did have a history of throwing things during meltdowns, which I witnessed. So it was possible that he might try to throw the keyboard, too. But what nobody except me seemed to understand was that his meltdowns only happened on the days when he wasn’t given access to the keyboard. He was calmest when playing it.
These were the ways that each student was failed. They were treated as less than human, as non-thinking and non-understanding. Teachers spoke openly, in front of the students, about how much they hated their jobs. The knowledge and skills of students were severely underestimated. Students like Matt were not provided with real books, real intellectual challenges, or the ability to fully express themselves creatively.
And quite honestly, not all of that was purely a function of ableism. It was also a function of the socioeconomic status of the teachers, and the ways they were unappreciated, undervalued, and underserved by society at large. When these teachers and aides aren’t given proper tools and resources to understand and assist autistic people, they will inevitably fail. When classrooms don’t have enough books, when teachers have to buy their own art supplies, and when there’s only one keyboard in the entire school, the students aren’t going to get their needs met. When the school is understaffed, people are working overtime to pay for their mortgage, and teachers have to stop meltdowns during their lunch breaks, they’re bound to have negative attitudes about their jobs and lives in general.
The solution to this problem is two-fold: start funding the important work of educating and caring for disabled people, and start creating seminars and workshops for these teachers to learn about disability from the perspective of disabled self-advocates, so that they will be best equipped to serve their students’ needs.
This topic is a long-awaited one, and something that not everyone will understand immediately. That’s okay. This post is here for you to learn from, even if you have to return to it more than once and do your own independent research in the meantime.
Before you read this, it’s probably relevant for you to know that I was raised in an anti-capitalist household. My mom has a PhD in Sociology, and her dissertation focuses heavily on the way that female re/productive labor is exploited under capitalism. She has been heavily influenced by the academic work of Silvia Federici, and Chris Knight (an anthropologist).
For over a decade, I’ve been in constant conversation with her on these issues. It has taken me an incredibly long time to fully understand everything, but now I have an understanding deep enough to debate her, educate her, and sharpen both of our knowledge. One of the key things I’ve educated her about is the way that disabled and autistic people fit into the big picture of capitalist exploitation. Now, I will do the same for you.
I think the best thing to do is to give you the general framework for understanding, and then provide you with specific examples that fit into the big picture. That way, you’ll know what you’re looking at when I give you the examples.
First, you need to know what capitalism is, and how it relates to every other system of oppression. Capitalism is an inherently authoritarian, patriarchal economic system, characterized by private ownership of the means of re/production, and the exploitation of re/productive labor to create surplus product/profit for the owners of an enterprise. Under capitalism, everyone is expected to reproduce, to create new workers. Additionally, economic growth (the creation of surplus/profit) has to be exponential, constantly increasing, in order for the system to survive. This means that the ecological boundaries of the planet are exceeded, because the Earth (coded female, of course) is assumed to have an infinite amount of resources to extract and create profit from.
This economic structure necessitates a binary reproductive class system, with reproductive females as the “working class,” and pregnancy as the labor required to produce the end product, new workers. This is why abortion is often heavily criminalized in patriarchal/capitalist societies. It is also why same-sex attracted and gender nonconforming or trans people are criminalized and stigmatized: we don’t conform to the re/productive expectations associated with our sex at birth.
Ethnicity has also been weaponized as a tool to create class categories that we now refer to as “race.” People racialized as white are afforded economic benefits. People racialized as Black are severely economically exploited. In order to fully understand the way that American capitalism developed, you have to understand slavery as the origin point. You must also understand that “race” is a tool that the ruling class employs to keep the working class divided. Because they know that if working-class white people joined forces with Black people and other POC, it would be over for them. MLK understood that, and was assasinated right after the Memphis Sanitation Strike, which was a major part of the the multiracial Poor People’s Campaign (which still exists today, btw!).
It is also important to realize that capitalism, characterized by private ownership, is not the only predatory/authoritarian/patriarchal economic system out there. There were older forms, like feudalism. And the USSR, China, and North Korea are good examples of the way that States can co-opt the role of private ownership and turn an entire country into one large corporation. It is therefore much more accurate to describe those countries as demonstrating a system called “state capitalism” rather than “communism.”
So what does all of this have to do with disabled people? And what does it have to do with autistic people specifically?
Well, under capitalism and other predatory economic systems, everyone is expected to be able to work in a manner that serves the ruling class by producing surplus/profit. If someone is not able to work at the same pace as everyone else, or perform the work required of them, they are no longer of value to the system. In an economy like this, people’s productivity is the only measure of their worth in society.
This has obvious and far-reaching implications for disabled people. So now, let’s get into the specifics that I told you I’d talk about earlier. I can’t think of a way to do this chronologically, and I don’t know how to organize everything I’m about to tell you. But hopefully you’ll be able to pick these pieces up and put them into the framework I’ve provided.
Disabled people are often killed, discarded, and left to die. This is a problem that exists worldwide, because patriarchy/capitalism are systems that exist worldwide. One notable example is the Aktion T4 program in Nazi Germany, which ended up being the precursor to the Holocaust. In this “euthanasia” program, which started in 1939 and continued until around 1945 (even though it technically ended in 1941), around 300,000 disabled people were killed across Germany, Austria, and Poland.
During this program, Hans Asperger (the man who gave Asperger Syndrome its name), saved autistic people he deemed “valuable” to society (for their ability to work under capitalist expectations), and sent other autistic people (who he saw as “unworthy of life” bc of their inability to work in the ways desired by the Third Reich) to die in gas chambers and death camps. This dark history is why the vast majority of autistic people despise the term “Asperger Syndrome,” as it promotes the idea that autistic people who conform to capitalist notions of productivity and intelligence are inherently superior to (and more worthy of life than) autistic people who can’t or don’t conform to those standards.
And you know how I talked earlier about how patriarchy/capitalism want everyone to reproduce? Well, the main exception to that rule is disabled people, because disability is often genetic and inheritable. The system hates it when more “defective” workers are produced. So, beginning in the United States around the 1910s and continuing into the present day, forced sterilization of disabled people became commonplace. Between 1909 and 1963, there were around 20,000 forced sterilizations in California alone.
The main reason given for these eugenics practices was to save money and limit the amount of resources spent on caring for “undesirable” people. Because after all, caring for people who won’t in turn produce surplus for you is just an impractical drain on resources /s. Now, I want you to turn this critical lens to these modern issues:
It is still legal in the United States to pay disabled workers below minimum wage. For example, Goodwill pays its disabled workers as little as 22 cents an hour. (Because even when we do work, our work is not seen as valuable)
Disabled people often lose all of our disability benefits if we get married, even if our spouse doesn’t have the financial means to support us. This means that many disabled people who rely on social security are completely unable to get married. (Because someone else should be taking care of us, we shouldn’t be wasting the government’s money with our existence /s)
The main focus of ABA therapy is on molding autistic children into employable adults. This means making them perform as many neurotypical “skills” as possible, in the hopes that they will be hired to work as “productive members of society.” Regardless of the methods used to try and achieve this goal, it is misguided to try and force autistic people to conform to the expectations of an exploitative system that was not built for us.
There’s so much more that I can and should talk about, but for now I’ll leave you with some things to Google and research:
Murray Bookchin and Abdullah Öcalan, Rojava / The Federation of Northern Syria, Democratic Confederalism / Liberterian Municipalism
Cooperation Jackson
The Zapatistas in Chiapas, Mexico
Crip Camp / the American Disability Rights movement
Extinction Rebellion
The Poor People’s Campaign
10 Principles of Disability Justice by Sins Invalid
“Ancient Bones That Tell a Story of Compassion,” from the New York Times
Mutual Aid as a political and economic theory & strategy
Matrilineal societies and the “gift economy”
Thank you for listening and learning with me. In love and solidarity,
School dress codes can be harmful to autistic people.
We received a DM the other day from an autistic student who is not allowed to wear a bandana at school (around their nose/mouth or anywhere else), even though it’s a useful sensory tool for them.
So here’s an incomplete list of clothing items autistic people might need to wear for sensory reasons, that are against certain school dress codes:
Sunglasses (indoors)- many autistic people wear sunglasses because they’re sensitive to light, particularly fluorescent lighting, which is very common in schools.
Bandanas-autistic people might wear bandanas over their faces to protect from smells. Or, they might wear a bandanna on their wrist or around their neck as a comfort item/ stim toy.
Hooded sweatshirts- most schools ban students from wearing hoods inside. However, autistic students might use hoods as a tool to block out visual input in their peripheral vision, and to slightly dampen sound in the classroom. Hoods can also be very comforting in that they provide the sensation of being held in a soft cocoon.
Chewlery and other wearable stim toys- some schools have policies that restrict the type of jewelry students can wear, if any. In addition, many schools have restrictions on stim toys, thanks to neurotypicals abusing things like fidget spinners (which originated as tools to help neurodivergent people) .
Earbuds/headphones-many schools ban students from listening to music in class, even during quiet individual work. However, some autistic people need to be able to listen to music to block out all of the distracting, uncomfortable auditory input of the classroom.
Schools also often have bans on chewing gum, which is understandable because they don’t want students putting gum in irresponsible places. But some autistic people need to be able to stim by chewing on gum, so this ban can do more harm than good in those circumstances.
Fortunately, autistic students may be able to request accommodations under 504 plans or IEPs, which would allow them to make exceptions to the school dress code and wear what they need.
But the official dress codes are one thing. Another aspect that isn’t often talked about is the way that autistic students are treated by peers based on the things they wear.
Autistic students may be stigmatized by classmates for wearing certain things like ear defenders, sunglasses, or chewlery. This is because these sensory tools (and dare I say, staples of autistic fashion) are not worn at school by the vast majority of people.
This makes it more difficult for autistic people to meet their sensory needs. Even if certain things, like ear defenders, are perfectly acceptable and allowed under the school dress code, autistic students who wear them run the risk of being socially ostracized even more than they would have been just by virtue of being autistic. This can create a situation where autistic students feel that they have to choose between meeting their sensory needs, and being accepted by their peers.
Even fashion choices that have nothing to do with sensory needs can result in judgement from classmates. For example, some autistic people wear items of clothing related to their special interests. They may wear graphic T-shirts with their favorite cartoon characters, or homemade gadgets that mimic the things certain characters wear. Especially if their interests aren’t widely deemed “age appropriate,” the risk of being teased for this type of clothing is unfortunately high.
Autistic people may also have a habit of wearing the same clothes every day, of wearing clashing colors, or wearing seasonally inappropriate clothes. All of these things can contribute to social isolation- but that’s not autistic people’s fault.
What autistic people wear, and whether or not it conforms to dominant standards, can make it more or less obvious that we’re “different” in some way. The key thing to remember is that being different isn’t a bad thing, even though other people often act like it is.
Autistic people deserve to live in a world where we can wear whatever we want, and whatever we need, without other people misunderstanding us.
All of these are messages from people who follow us, who have used things from our account to directly benefit the autistic people in their lives. These kinds of DMs are my absolute favorite to receive, because they show me what kind of real-world impact this account is having.
#1- a nonspeaking episode at summer camp
Because of posts on this account about losing speech, this camper was able to go ziplining even though she couldn’t speak at the time. Instead of getting frustrated or confused and making the problem worse, this person thought of our account and remembered that sometimes autistic people lose the ability to speak when we’re overwhelmed. Then, this person worked with the camper to accommodate their needs. Hearing about this made me sohappy.
#2- Instagram posts as communication tools
This message blew me away when I read it. I hadn’t even considered the possibility that things I write here could be used as communication tools for nonspeaking autistic people. What’s so touching to me about this is that my writing has served as an avenue for these two siblings to bond and connect with each other. And it makes me wonder what would happen if more nonspeaking autistic people were given access to accounts like this, so they could use the writing of other autistic people to express their experiences.
#3- changing ABA, one therapist at a time
If you’ve followed this account for a while, you’ll know that we’re incredibly critical of ABA therapy. And I maintain that it’s usually best for therapists to just leave the practice altogether, because it does more harm than good. But if individual therapists like this one start changing their own behavior and questioning the underlying assumptions that build the foundation of ABA, real change is possible. Instead of doing what they had been trained to do, this therapist thought about our account and what we’ve said about the underlying causes being way more important to address than the behavior itself. That had a real, important benefit to the emotional health of the child.
…
We get tons of DMs every day, many of them telling us that this account has been immensely helpful to them. I appreciate all of your comments and messages.
But what sticks out to me about these DMs is the narrative that ties them all together.
The story is one about insight, critical thinking in real time, and a fundamental shift in the way autistic people are treated by others.
It’s my favorite kind of story to read.
~Eden
(P.S. if you have stories like the ones I shared above about ways this account has impacted your interactions with autistic people in your life, please comment them below or DM them to us! I love hearing from you)
this post annoys me for several reasons but it really just feels like people think that like trans men got jealous that trans women got a special term to describe their oppression and wanted one for themselves and not that it’s just easier to talk about your oppression when you have shorthand for it.
also with the whole “transmisandry isn’t real because misandry isn’t real” thing is that like. i’m not gonna act like men as a whole are systemically oppressed in the same way women are or that “transmisandry” itself is a great term but like? i’m also not gonna act like the ableism, homophobia and racism ive received has had nothing to do with my gender. like men of color don’t also face gendered violence. or aren’t seen as more threatening because they are MEN of color.
This idea we have as a society that if you initiate a handshake it has to be with your right hand is fucked up and lowkey ableist but y’all didn’t hear that from me
So, there’s apparently research coming out now about microplastics being found in people’s bloodstreams and the possible negative effects of that and I feel the need to get out ahead of the wave of corporate sponsored “be sure to recycle your bottles!” or “ban glitter!” campaigns and remind everyone:
It’s fishing nets. It’s fishing nets. It is overwhelming fishing nets It always has been fishing nets.Unless regulations are changed, it will continue to be fishing nets.
The plastic in the ocean in largely discarded nets from industrial fishing. The microplastics are the result of these nets breaking down. The “trash islands” are also, you guessed it. Mostly fishing nets and other discarded fishing industry equipment.
Do not allow them to continue to twist the story. Do not come after disabled people who require single use plastics. Do not come after people using glitter in art projects and makeup. These things make up a negligible amount of the issue compared to corporate waste, specifically in the fishing industry. Do not let them shift the blame to the individual so they can continue to destroy the planet and our bodies without regulation.
“what do we do about people who fake disabilities to get ssi” we throw them a fucking party for pulling off the most difficult and unrewarding grift of all time. literally i don’t care
i wholeheartedly embrace the fuck-the-systemness solidarity of this and therefore have to make sure i understand both sides … so we’re saying ‘fakes’ do not hurt the ppl with true disabilities who have to fight tooth and nail for benefits?
sadly i have firsthand work experience in this area, via medical office with FT social worker, and i promise, the folks ‘faking’ would be the last people you’d want to party with…thankfully our docs were EXTREMELY rigid about identifying said grifters. honorable mentions, 100% real:
• 40 yo M: “can you just give me disability, i need time away from work to pursue acting career. they don’t give us FMLA or anything”
• mid-aged couple: sentenced to community service by local court, requesting SSID status to exempt them from having to fulfill. the task what assembling mailers
•45 yo F: “i just want the placard for better parking spots at work. can’t you just get the doctor to say i’m disabled?”
•50 yo M: orthopedic injuries presented to obtain opioids and SSID benefits, MD reviews all MRIs and CTs, clean. patient denied both requests. storms out of office, throwing his cervical collar down in waiting area on way out as limp magically disappears
i’ll open myself to critique here, suffice to say, i cannot help but think such characters have not contributed to the current screening state of this program. and anyone not getting what they actually need bc of it is anything short of infuriating for me. it’s super fucked, thinking about every single actually disabled person denied for every person faking that has been approved. not who that limited pool of collected public funds is for.
The grifters you have mentioned are painfullyeasy to identify. Many of the literally told you that they were faking it. They do not nearly justify the incredible difficulty involved in the process of actually getting approved.
You can be fully, provably disabled and you will get denied. People who judge your case often ignore evidence collected from everyone from family members to doctors to deny people. The reasons they give that you can keep working display a stunning amount of ignorance to how disabilities actually work or are intentionally attempting to deny people the tiny pittance of money given to people who desperately need it for basic survival.
The average approval time in my state is 21 months. Nearly two years going without what you desperately need to survive. If you try to earn some money in that time just to keep yourself alive it will be used as evidence against your case. No matter how damaging that work is or how unsustainable it is in the long term. For this reason many disabled people are forced into illegal and dangerous work simply because they cannot survive for two fucking years without any help, such as sex work. If they get caught trying to survive it will be used to deny the claim.
Now one might think that you could maybe save up before hand and make it through the process that way. Not so. With only a few exceptions, if you have at any time in the process more than 2000 dollars to your name it will be used as evidence against you. This 2000 limit will continue indefinitely as long as you are receiving benefits, and the government will monitor your bank account at all times so if it goes over your benefits will be canceled.
They will frequently demand for you to justify how you survived in the intervening period. How did you pay rent? How did you buy food? They will use your answer against you when they make your decision.
The amount of pointless, redundant, and difficult paperwork involved is another major barrier. Of course while they may take upwards of 6 to 9 months each step of the way, but you might receive a piece of mail that you have to respond to within days or it will be used against your case, or your case may be denied outright.
The form I had to initially fill out was 21 pages long. My wife and I both had to fill out another 14 page long document. I had to fill out details on the make and model of my car, because apparently people are worried that I might be driving a sports car. If you car is too nice they will use it against you. You are only allowed one car ever even if practically you really need two.
I attempted to apply for disability a few years ago. I messed up a couple questions because I did not understand them and it was used to deny my claim. I had to start from scratch, including resetting that 21 month waiting period.
The fact that I am a stay at home mom taking care of my daughter best I can is used against me.
The entire process is so strict and difficult to navigate that there are successful businesses called “disability advocates” that are practically required for a successful case. Fortunately their are laws that say they can only get paid if the claim is successful, and there is a cap on how much they cost so its nothing to lose. Of course this involves filling out even more paperwork, communicating with people, more work and more effort.
You need medical professionals to back up your claim or it will almost certainly be denied. Only Doctors are good enough. Mentally disabled and can’t afford several weeks of sessions? Physically disabled but you can’t afford a specialist doctor? Your chances of approval just dropped like a rock.
If at any time you act in such a way that isn’t stereotypically disabled there is a significant chance it will be used against you. The minimum capabilities required to go through the process are practically evidence against your case as well - for example, being capable of a coherent explanation of your symptoms and difficulties, Even if you broke down crying during the interview for a half hour because it is so difficult, is seen as proof that you are “capable of communication”, which was the exact reason given for my last denial. In the minds of the people making the determination I was capable of communication, which meant there had to be some job somewhere I was capable of performing.
If you have good days that fact will be used against you. If you go to an interview and don’t show glaringly obvious symptoms there is a good chance it will mean you will be denied.
The entire process is designed to discourage attempts. It is split into three stages. The first stage has only a 30% approval rate. The people you are talking about above never get far enough to even count against that approval rate. There is evidence in the form of leaked documents that people who do qualify are rejected instead simply to lengthen their approval process and discourage people to get them to drop out of their attempt. The first appeal has around a 10% approval rate. Only at the third stage, an actual court hearing with a judge, is there an approval rate in your favor at just over 50%. These three stages each may last between 6 and 9 months, which is why the approval process takes nearly two years.
At every step you will have to fill out more redundant paper work.
Those approval stats, by the way, are assuming you got one of those disability advocates. If you didn’t your chances drop significantly at every stage.
Almost all of these things are so strict in the name of “catching frauds” who may not absolutely need it.
The process is extremely difficult, humiliating, is difficult to survive, and is likely to fail. Almost no one gets approved their first time attempting the process, even if they plainly on the face of it absolutely need the benefits , because the process is so difficult. So a fraud would have to go through that entire painful process and succeed. So what do they get?
It will be around 700 to 800 dollars a month at most. Not enough to really live on, your going to be making hard choices between medicine, food, and shelter. You wont ever have nice things or live comfortably. And it comes with major restrictions that will force you into poverty and keep you there as long as you are part of the program. Any reasonable attempt you might make to better your own situation will be used to take your benefits away, you are not allowed to lift yourself out of a painful, difficult life of poverty. Many disabled individuals have to continue dangerous and illegal work, like sex work, in order to make ends meet.
By the way, if someone is doing sex work on the side and is caught, that will be reported as “fraudulent” abuse of the system. There are a good deal of other types of “fraud” claims used to deny benefits to people who need them and inflate the reported fraud numbers to justify these harsh screening methods.
This is what is meant by the original post. The screening process is so impossibly over the top and the benefits so little that the idea that fraud is a real problem on any scale is laughable. But it continues to be something people are obsessed over. Obviously we would not like actual frauds, but the entire structure of disability benefits is built around the obsessive attempt to prevent even one fraudulent case no matter how many actual disabled people suffer and die for it. “Fraud” is first and foremost an excuse to deny disabled people the tiny amount of help they desperate need just to survive.
So if somehow in some extremely rare case a person actually goes through that entire extremely difficult process just so they can live in poverty and pain with a pittance of survival money then I literally do not give a single fuck and neither should you. Stop obsessing over the minuscule chance of fraud and start recognizing that the insane screening process and laws in place are not due to supposed fraud attempts, it’s due to a desire from those who put those laws and screening process in place for us to just die because they see us as nothing but a drain on society.
Statistically speaking your “extremely rigid” docs are most likely denying tons of legitimate cases because they do not understand disabilities, which is extremelycommon (far more common than not), and using these honorable mention cases as justification for how good they are at clocking ‘fakes’. They are the reason we have to perform humiliating stereotypes of disability at every turn or be denied. They are virtually certainly one of the biggest parts of the problem.
