prosciutto

 

“I believe that one of the most dignified ways we are capable of, to assert the reassert our dignity in the face of poverty and war’s fears and pains, is to nourish ourselves with all possible skill, delicacy, and ever increasing enjoyment. And with our gastronomical growth will come, inevitably, knowledge and perception of a hundred other things, but mainly of ourselves. Then Fate, even tangled as it is with cold wars as well as hot, cannot harm us.” -M.F.K. Fisher, 1942

I have an afternoon free and I’m in town, so I’m at a farm. We carry bags of feed to the pigs, find shiitakes on the logs by the creek, move a chicken tractor. I’ll take any opportunity to be involved in the work on a farm or in a kitchen: the rituals of food are sacred, the rituals celebrate and bring us closer to the source of what sustains us. It matters to do what is important when you can. Be mindful when you’re walking, pray with your footsteps and your hands, connect with the divine as you wake dry yeast to life with water and sugar and raise the breathing dough into bread, celebrate the divine in one another as you break bread with your beloveds and with strangers. Harvest wild foods and be grateful. Knowledge shared is a kind of prayer.

We know ourselves by the stories that connect us with the purpose of what we do and the people who did these things before us. As Martin Prechtel writes, our work as humans is to live beautiful lives that honor the source of life, and particularly in these days of decline, to reconnect with the traditions of our indigenous ancestors (we all had indigenous ancestors): to become ourselves ancestors worth descending from. For this reason, I have grown San Marzano tomatoes and canned them up as the red sauce that is the blood of Sicilian ancestors, and I have sat in the light of winter and traced needle and thread through the stitches my grandparents placed in the quilts that warm the beds, repairing the wear on the stitched fabric made from my mother’s worn-out clothes, and I will pass these quilts and these stories on. The connection and the story are sacred.

Comfortable in the afternoon light, he’s pulled from the fridge bags of pork jowl, remnants of the pigs he raises. I recall my grandmother’s baked pork jowl and pinto beans and collard greens, the ritual lunch on New Year’s Day, a southern Appalachian tradition: the collard greens and pinto beans represent the money that will come to you in the year, food is fertility. With the food came the admonition that what you do on New Year’s Day you do for the rest of the year; time is a fractal, recursive, and this is honored in tradition.

I’m sitting at his kitchen table, sipping a beer in the warm afternoon, listening to the sudden heavy rain outside, watching as he slices through the slab of meat with a small knife, and I think maybe each knife is his favorite knife: many of them made by friends, handed down from friends, populating the kitchen with their stories.

He’s pulling out the sliver of jawbone and the small glands, tossing the raw meat of the jowl into a pan – pink, juicy, flabby. There’s a digital scale over to one side of the kitchen, and an old three-beam scale on the other side, and a small calculator. He’s weighing each pork jowl on the newer digital scale, calculating the salt and spice with a memorized ratio, and weighing the salt and spice into his grandmother’s brandy snifter placed on the triple-beam scale that belonged to his father.

The pork jowls are bagged up with their salt and spice and slid back into the fridge, an equilibrium cure. Whoever receives them will cook and prepare not only a meal but a moment, a story, a slice of death-become-life and the alchemy of salt and time and the result of the work that is sacred.

Laying on another counter is a prosciutto, a whole shoulder-and-leg-and-foot, dry and compressed and dark, cured with salt and hung since winter. It looks like exactly what it is: the carefully preserved part of an animal, recalling the mummified bodies of a saint, sacred relics, ancient traditions. He watched this boar as it was born, he fed it and raised it up, killed it, cut the body apart, built the salting box from old barn wood and the smoking boxes from old restaurant refrigerators, and hung the shoulder in his workshop through the winter. This is the body, given to you.

Traditionally it’s the ham and not the shoulder cured for prosciutto, and traditionally not an intact boar: unless castrated, the fat of the boar will carry an intense aroma of musk and ammonia, a flavor that, to some, ruins the meat.

He opened the prosciutto a few nights back to share with friends who will be moving away soon, a communion, another layer of story to the food that sustains us. Today he’s cutting carefully into the inner meat of the shoulder and the leg, pulling away tissue-thin slices of the clean and compressed layers of fat and meat. Blood-dark red outside, as pink as your inner lip inside and marbled with smooth white. The outer crust of the prosciutto is dry and salty, the meat inside is soft and sweet. The leg laid out on the counter, although transformed by salt and time into food, bears none of the artifices we usually see from the nourishment of our over-processed lives. Here is the foot, and here is the bone in the shoulder that connected this leg to the animal, and the muscles that moved, and here is the flesh cut away like a surgery, like an anatomical drawing, the grain of the muscle and the clean lines of fat, and the knife sliding in, and his hands inside the body of this animal, and the insides on the outside where they should never be. The intimacy is raw and disturbing and honest.

Soon I taste a piece that carries the taint from the uncut boar: the thin sliver of meat is soft and sweet on my tongue, salt at the front of the flavor; and as I chew, the fat releases a punch of sharp musk straight up my nose from the back of my mouth, and I recognize it as the fragrance of an unwashed and undeodorized body, intensely male. Paired with the sweetness from the alchemy of cured meat, the flavor profile now has an edge and an intense complexity.

I imagine this salt-cured boar shoulder described by a sommelier in the poetry of wine, I imagine it marketed as “like bacon that tastes like raunchy fucking,” because that’s what it is, right there on the table and on my tongue, the intimacy of the inside of the body split open and bare, and the alchemy of salt and time. Too much salt or too much time will kill you just as well as having none of either, but there’s nourishment and poetry in the balance, in the equilibrium, in the cure.

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autistic evil billionares

THE RECLUSIVE HEDGE-FUND TYCOON BEHIND THE TRUMP PRESIDENCY :How Robert Mercer exploited America’s populist insurgency. (New Yorker, March 27, 2017)

Robert Mercer is a billionare behind Donald Trump’s presidential campaign. He and his family are using their wealth to create an America they believe in – one where the nuclear fallout from the bombing of Hiroshima was good for the health of the Japanese, where global warming is good for agriculture, and where black people were better off before the Civil Rights Movement.
While listening to this week’s Best of the Left, I heard a piece (youtube link below) describing Robert Mercer’s eccentric beliefs, unemotional valuation of human life (value = wealth, so he’s more valuable than someone on welfare, who has no inherent value), and his reclusive habits. As mentioned among several sources, it seems painful for him to make eye contact.
The conversation around this person is centered in OMG how terrible awful he is, so robotic, so uncaring.
It’s painful to hear someone who is very harmful described as having autistic traits, and I wonder what the conversation would be like if those traits were named as autism. Is it possible to separate autism from ethical orientation? If he were to meet the diagnostic criteria for high-functioning autism, could that explain both his self-made accumulation of wealth as a “brilliant computer scientist” and also his robotic judgments regarding the value of human life?
I recognize that robotic valuation of life in myself. My value as a human is entirely transactional. I don’t apply this rule to other people because they possess many data points to which I don’t have access, I assign every other person the value of “Yes, you deserve a good life”.  Also, I do inherently want other people to be happy. The idea of thinking someone else has less worth than me is completely horrifying.
But, because I have access to the data points regarding myself as a person, I understand that I inherently do not have the same social value as someone who has more symmetrical facial features and better social skills. You mean neurotypical people don’t think this way, don’t apply blunt logic and math to everything? I could delineate my entire existence onto a scatter graph on a whiteboard. Every relationship, every interaction, is a mathematical calculation.
(I have value to myself, I have value to the people who enjoy my existence, but I do not possess characteristics which are highly valued socially, therefore I do not possess a high social value)
If autistic people cannot experience emotion the way that neurotypical people can, and if we cannot experience empathy (because we cannot read and predict others’ emotional responses – obviously there is a range of ability here) – if it is really so terrible to have a calculator as a brain-
sometimes it is just very difficult to believe that I ought to continue to exist.

communication

I called him from the town where we met, where I still live. I called him where he lives now, a time zone away, halfway across the continent. I dialed a number with an area code the same as many of my friends, three digits that reference the broad spread of this place that is home. I am amazed at the portability of identity, this ease of access. He is so far away.

I had sent him a text a few days before – “How are you?”

I thought, but didn’t write, because it’s too much:

I think about you often, I want to make sure you are well. I have measured in small ways the turn of seasons in this town against memories from the years you lived here: soon there will be the spring festival and then the sister autumn festival at the campground where I saw you play on the stage with the big band behind you, where you stood beside me at the bonfire. I no longer eat at the cafe where we used to sing. Sometimes these things remind me of you and I want to be sure you are well.

Sometimes we allow people to dwell this way within our interior lives. It’s a gift, to be  open to memories, to give a friend a place within the mansion of our  minds. As much as the observation of seasons brings us closer to the truth and closer to the good life, community is something that exists not only in the physical space when we are in the room together, but also when we allow ourselves the heart-openness of knowing others, remaining connected.

(We have gone years without speaking. I have gone half a year or longer without thinking of him, but part of my heart is forever broken open, in a good way, but in the painful way the flower must burst from the bud, from the hours spent sitting beside him doing nothing more than showing up and being there, Being There.)

So a few days ago, he called after my text, and he left me a voicemail, and he said some words, and some of them were what I’d not said – “I think about you often enough”. He apologized for accidentally having his phone on silent. I’d missed his call because my phone was also accidentally on silent.

I called back. We talked.

There are always synchronicities where he goes- they travel with him, like the rippling wake of water behind a boat. I don’t know if he sees them.

(The position of an object in space is only known in relation to other objects. You can know the position of a particle or it’s speed but not both. There are certain things you can only see from the corner of your eye. When you’re in the woods and you’re hunting, whether for deer or for mushrooms, you open up your awareness to the gestalt, the patterns within the larger field of view, instead of looking at each individual leaf. Sometimes you meet someone and you know they know the same truths you know.)

There are parallels in our lives: observations, lessons we have learned. A desire to sit with a difficult experience rather than pushing it away (the mental jujitsu), a desire to throw ourselves into challenges to keep ourselves sharp and strong by overcoming them, always learning. Sit with this.

Right now we’re working hard to learn to live with something similar that we recognized in ourselves, in our histories, in our generational and epigenetic constitution.

And we are choosing to sit with it.

Compost that shit.

And we find reassurance in the belief that what we are going through as individuals is an echo of the global struggle to live with and grow from our cultural and generational histories of trauma: the planet has cultural PTSD, our acceptance of ourselves is mirrored in the increasing connection of the world as a whole, and is also mirrored through the ways computer learning and data analysis shape decision-making and influence the world.

We are not in this alone. Each part is a reflection of the larger whole. Our small lives are themselves fractal and recursive.

I need to remember this.

How do we live in a time of war and global connection? How do we live when technology takes over our lives? How do we live when a Nazi has the nuclear launch codes?

We all need to remember this. The struggle of waking up, the way sickness is a message to pay attention to taking care of the body. The part is a reflection of the larger whole. A person is a world, a cell is a community.

And I’m grateful, always grateful, forever grateful, for the people who have come into my life and together (meaning is created through the overlap of two fields of awareness) we have co-created a beautiful and simple and unconditional acceptance. It’s a privilege to appreciate someone and not need anything from them, and to be given that gift in turn. Emotional generosity.

Sit with it.

rules

Separately from the political, as if we could separate from the political, is some news from home.

My son and I have been talking about autism. This is a big step.

I don’t remember when I first told him he’s autistic – maybe after an IEP meeting at school when he wanted to know what we were talking about, or maybe when discussing the medication he takes and why he takes it (I require his input and buy-in on decisions like medication and interventions). I know that I initially explained it pretty vaguely – I think I said “autism” is a word for how he sometimes feels and behaves, like when he needs to wiggle his body around a lot and he can’t stop.

He went with me this weekend, with my aunt, at her initiative, to a three hour workshop on “coping with challenging behavior”, designed for the families of and people who work with autistic people. He sat in the room and colored and read a book, and in the car afterward I told him autism affects people very differently  – some people are so affected they can’t speak, for example. He said “Oh” and “Okay.”

We stopped at Goodwill on the way home looking for house things, and he found a book he wanted to buy. It’s called “Rules”, and it’s a chapter book for kids. The narrator is a girl whose super-annoying little brother is autistic.

Right there in the middle of the Goodwill I said “I’m a little concerned about this book. I don’t want you to think everyone finds you annoying.”

And he said “I read it at school and I didn’t think that!” so we bought it.

Later he was telling me the narrator meets a friend who doesn’t speak. Turns out the kid in the book is nonverbal and uses a speech board with pictures and words on it to communicate, just like was discussed in the workshop.

Thomas does not “seem autistic” at first glance. He spent today in the office with me because school was out on a snow day, and he was for the most part quiet and well-behaved. He was quiet and well-behaved because I brought books and snacks and activities and we wrote out a schedule at the beginning of the day and I had a clock he could use to check the time against his schedule and we had a motivational structure in place. He has the quality of hyperfocus: difficulty breaking away from a task, requiring a lot of support to be able to stop doing something before he’s ready.

He doesn’t “seem autistic” because it affects everyone differently, it’s a spectrum, and we had a structure in place, and structure helps, and because for the most part our expectations about “high functioning autism” overlaps with our expectations for “young boys”.

At a doctor’s office two weeks ago I had a meltdown.

The doctor was new to the practice, I had not been there in a year because I had been working with a wonderful psychiatrist who had to move away recently. I was there because I needed a refill on my anxiety medication so I do not go through withdrawal and have to go to the emergency room and have an involuntary commitment because I cannot pay for that shit. I should be working with a psychiatrist, but there literally are none in town that take new patients so I have to instead make enough money to afford to drive three hours to see a psychiatrist.

The doctor was in the room for less than five minutes. When he asked how I was doing I launched straight into my full medical history, the ptsd and anxiety diagnosis, and how I’e tried literally every class of antidepressant and anxiety pill, and how the diagnostic codes on my bills are wrong I am not diagnosed with depression that’s why I’m not taking antidepressants, and why I haven’t been there in a year and what medication I was prescribed and that I need a refill because I’ve been between jobs so I haven’t had insurance so I don’t have a psychiatrist yet and beside there aren’t any in my town with availability so I just need a refill please.

He didn’t understand what I was talking about.

He said “I don’t understand what you’re talking about.”

So I tried again, slower – I was seeing a psychiatrist but she had to move away and I need a refill.

He asked if the medication was working.

I said no, because it isn’t.

He asked why I want a refill, then, if it’s not working.

I started to panic.

Because it’s not your job to do a full psychiatric evaluation, and I just got a copy of my billing history and y’all charged me an extra $150 the last time I talked too much and I can’t pay for that right now, I just want to not go through withdrawals, I will go through withdrawal if I don’t taper slowly off this medication,  I just need a few refills until I can find a psychiatrist and another therapist and get a plan in place.

He said “I’m getting the psychologist” and he left.

I was crying by the time she came in – because the doctor didn’t follow the script. I have a lot of scripts for interactions but I don’t have enough, and if they’re not followed I don’t know what to do. It’s like a black hole, like an abyss, it’s terrifying.

She agreed to have the doctor write a refill.

She wanted to know if there was anything else she could help with.

I said “I’m trying to get a referral for an autism evaluation but I know you don’t know me well enough to do that and I’m not coming back here so I have to find a new doctor and build a relationship and I don’t know what to do so that probably won’t work anyway.”

She said, “You don’t seem autistic.”

I had not made eye contact with her or the doctor. While I spoke my eyes were all over the room, I was waving my hands around as I spoke, and I refused to sit in the patient’s chair because it was too crunchy and that made me unable to think. I answered questions literally even when it was against my best interest, and my pressured speech worried the doctor, and when I wasn’t talking I was flipping the fingers on my right hand in a stereotypic movement that arises like a compulsive tic when I am anxious. I did not appropriately engage in small talk, and I unnerved them because I didn’t follow social rules.

But I didn’t “seem autistic.”

She does not specialize in autism. Her understanding of autism excludes high-functioning people, especially high-functioning female people. There’s a damn good reason an autism evaluation usually takes three fucking hours. Shit is complicated.

In the weeks since that appointment I have dedicated approximately twenty minutes every day to talking to myself in the car, rehearsing what to say the next time someone tells me I don’t seem autistic.

So I can have a script.

Because I’m on the goddamn spectrum whether you like it or not, and it has a significant enough impact on my ability to function that I would like a fucking diagnosis so I can either fix this shit or develop realistic expectations about my life because I am tired of getting fired from jobs or panicking all the time at work because I am on the fucking spectrum.

I don’t seem autistic in a ten minute interaction in the doctor’s office. I don’t seem autistic because I don’t tell you all the very specific rules I have for my clothing to avoid sensory over-stimulation. I don’t tell you about the scripts, about the meltdowns, about the bluntness that everyone else sees as criticism, about how I ruin every intimate relationship I have by being unable to understand subtlety, by speaking too directly, by taking things too literally, how I don’t understand the point of jokes, how I failed to appropriately follow social behavioral rules as a child and the kinds of trouble that got me into on a regular basis, how much I rely on routines and lists and schedules, how I am periodically nonverbal, how I communicate primarily through the recitation of facts with no concern for whether it hurts someone else’s feelings.

Today my son caught me talking to myself, thinking out loud. He smiled at me and I smiled back and we laughed, and he said “Um. Why do you move your hands so much when you talk?”

I remembered my friends in high school grabbing my hands because it would make me stop talking. Funny trick. Ask her a question and then grab her hand and she can’t talk.

I thought about my body language, how sometimes I use my entire body as a gesture when I’m speaking, how the vast majority of people don’t do that, how it’s always been a “quirk” I have. I remembered a friend from high school, wondered if he’s also on the spectrum, remembered how he’d talk your ear off about something he was interested in, how he’d sometimes zoom when other people were walking, sometimes jump straight up and down when he got excited. All the little quirks that, if you’re lucky, your friends accept. I thought about how I look to other people and how rarely I am aware of how I look.

I said “You know how I said autism affects people differently? For me it’s how I move my hands when I talk. You know how you have to finish what you’re saying when you’re talking and you can’t stop until you’re done? It’s kind of like that”

 

 

there is a poetry in this

ruby screenshot 1_3_workspace.png

There is a poetry to this:

gem ‘spring’,

gem ‘byebug’

gem ‘listen’

There are rules and a rhythm, there is organization and there are relationships.

I am learning to write in the programming language behind many of the websites we use, the websites that are shaping our culture: Twitter, which is a visual method for interacting with a database, where the database is composed of the “tweets” you enter into the box on the page, where that “tweet” is an object living in a table, which is composed of rows and columns (like an excel spreadsheet), where an item in one table (your name + your tweet) may have a relationship with another table (someone else’s name +retweeting your tweet).

Information is made up of component parts, which relate to one another in ways that are predictable.

We can only create positive change if we understand.

“Yellow” is an attribute, and items exist which have that attribute: lemons, dandelions, golden retriever puppies.

Those items also have their own attributes not shared by the group: round, flower, fluffy.

Brains are computers and computers are brains. We use logic to make decisions (that logic might be flawed or invalid but it is logic nonetheless). We assign meaning to events, and create rules for behavior and interaction based on those events.

We view people as items which have attributes, which belong in a group.

All Muslims _____. Gay people are ______. Black people are ______.

This is how our brains work.

Compassion gives us the tools to break out of these strict categories of understanding, to stop being racist selfish assholes. Fear keeps us stuck in these boxes.

I have found a way to create tools for the resistance, and I’m making, both for my own education and to share, what I hope will be an interactive website based on INDIVISIBLE: A Practical Guide to Resisting the Trump Agenda.

Coding for the rebel army.

 

on saving the world

Like many of the strong, ethical, wild-plant-medicine-witch, back-to-the-land women I know up here, I recently moved out of an off-grid bus and into a house in town. It’s funny how those stories come out when I open up about what I’ve been doing: “Yeah, we lived in a bus for ten years, we had a woodstove and the kids were all babies.” And this person did, and that person did too, or there was a cabin, with chickens and goats. They always say “But what the fuck Elliot, you can’t do it alone. You need someone else to help chop wood and carry water and watch the kid, you can’t do this shit by yourself.”

And they’re right. I get caught up in thinking I can do everything by myself, or I rely  on people who seem to be interested but who aren’t as committed as I am (because I can’t read the nuance of social interaction or anticipate other people’s desires when they’re different from mine because lol #autism).

I finally realized I’ve been really poor for a really long time, and it’s hard to give a damn about saving the world when you’re cold and tired and hungry and scared.

So we’ve all moved back to houses in town. We find the work that needs doing. I keep reminding myself I’m here to forgive myself. The mantra that has evolved from my internal conversations is “You’re here to sit the fuck down and forgive yourself.” Sit the fuck down.

Forgiveness for not raising chickens so I wouldn’t have to buy meat at the store.

Forgiveness for not understanding how autism and PTSD impact employment and intimate relationships, including parenting. Forgiveness for having those conditions in the first place. Not good enough? Forgive.

Forgiveness for failing as a farmer: for thinking I could do everything without considering whether I could do any of it well enough.

Forgiveness for believing I could think my way out of PTSD and autism if I just tried hard enough or stopped eating gluten or took reishi tinctures or whatever.

Forgiveness for making mistakes.

Somewhere at the other end of this is the focused and consistent effort necessary to join in the co-creation of the world we want to live in. This is a terrifying world to live in, and I can’t seem to escape constant reminders of how climate change is already impacting us, or the manufactured tensions between the US and Russia (are we trying to instigate a nuclear apocalypse?), or  whatever the fuck is happening with our rapist in chief. This world requires hard work. But you really can’t do a damn thing about it if you can’t see the high wall between you and that work. You can’t try harder if you don’t know what’s holding you back.

I’ve tried “acceptance” and I’ve always wrestled it away from quiet observation into action requiring change, I’ve shoved a few “shoulds” into there. Yeah I can accept that I’m ____ but I should be ____.

Forgiveness seems to just turn that off. Feeding those hungry ghosts. Just sit there and look at them.

Maybe if I can forgive myself all my bullshit I can forgive all of us for whatever mess we’re in as a species and then I can see clearly enough to do something about it.

 

 

words matter

I just spent two hours writing a hellacious long essay, complete with citations and references, contrasting autism with  physical disability and mental illness and other developmental disorders, focusing on the fact that Autism is unique even among developmental disorders (it’s a developmental disorder) because treatment is focused on making it more comfortable for other people.

But ain’t nobody going to read that shit so I’m gonna try to make this quick.

Somebody wrote a comment today on a family member’s Facebook post about my autistic son, and I’ve been stuck all damn day thinking about why that comment pisses me off.

img_20170103_141150

So what the fuck exactly is wrong with this? It sounds like a compliment, right? People with “Asbergers” are “refreshing”.

Okay it’s a fucking problem because number one it starts out by assuming an us/them dichotomy. The author is neurotypical or they’d have said something like “Those of us with Autism”, and they assume the audience is also not Autistic, or they’d have said something like, again, “Those of us with Autism.”

Second this whole shit about being “completely trainable” what the fuck is that.

Do you think it’s okay to “train” a person who has a degenerative muscular disease to try really hard to use their legs? No, you get them a fucking wheelchair and a fucking wheelchair ramp. This is in fact enshrined in legislation through the Americans with Disabilities Act.

For fuck sake, there’s Braille on drive through ATM’s. Because folks who have physical differences deserve to have the physical world around them shaped in a way to accommodate their existences.

Folks with mental illness have a right to treatment through medication and therapy as enshrined also in legislation: The Affordable Care Act specifically. Mental illness is treated usually through a combination of medication and therapy, where the pills reduce the symptoms and the therapy teaches you how to cope with it. In some cases therapy teaches you how to change your patterns of thought and behavior which contribute to or exacerbate the intensity of the symptoms you experience as a result of your mental illness.

The important thing here is that intensity is measured by how it feels to the person with the illness, and treatment is designed to make life easier on the person with the illness.

In fact it’s not even diagnosed unless it causes you problems. You might have the “odd” habit of straightening everything on your desk into right angles, but it is literally not Obsessive Compulsive Disorder unless it causes you problems. I mean literally in the diagnostic manual it says the behaviors must “be a source of distress or interference with activities.”

Guess I couldn’t resist a citation. Anyway.

If it ain’t a problem, it ain’t a problem.

It really wasn’t that long ago that we were locking up and hiding away people with physical differences and mental illnesses because they made people uncomfortable but these days it’s pretty much understood to not be okay to do that shit any more.

Autism is a developmental disorder. While certain symptoms can be alleviated through medication (specifically, certain antipsychotic medications can increase flexibility and reduce the tendency to get stuck on routines or schedules), medication does not cure it.

There is no pill to make an Autistic person comfortable with eye contact if that’s one of their symptoms.

Autism is not caused by dysfunctional patterns of thought and behavior. While depression might be exacerbated by the belief “I am unlovable”, people with Autism are not literal in their communication due to an underlying belief like “I don’t deserve to use metaphors”. That’s just how their brains are put together.

The most common treatment for Autism, Applied Behavior Analysis, is very controversial because it uses reward and punishment to make the Autistic person more comfortable for other people around them.

Don’t take my word for it. Here’s an article from a respected source. 

ABA is controversial because you literally punish an Autistic child to make them stop hand flapping.

If you’ve got a kid whose neuromuscular disease causes repetitive movements you don’t punish them to make them stop because it bothers you. If you’ve got a kid who has seizures you don’t punish them to make them not have seizures. You might use medication to reduce the seizures because they’re fucking dangerous, but you’re not implementing treatment there because the flapping bothers you.

Even with other developmental disorders, like dyslexia, the treatment is to change the way information is given to the dyslexic person. A change in the external environment is the treatment.

Autism is unique within the category of diagnosed “difference” in that the most commonly used treatments primarily focus on making the people around the Autistic person more comfortable.

And that’s a fucking problem.

Because literally every other difference, the right to self-determination is essential. Except with Autism. When you’re Autistic, you don’t have the right for other people to change how they interact with you to accommodate your differences, like you have with dyslexia or as a person who uses a wheelchair. You don’t get to require other people to chill the fuck out about eye contact. You instead get punished until you make eye contact. That raises your stress level and causes you to stim to the point of self-harming when you’re alone? Doesn’t matter. Gotta make the neurotypical people comfortable.

Fuck all that shit.

We have a right to not be “trained” to interact in a certain way to meet other people’s expectations. We can both accommodate each other. My friends are fucking wonderful at this: they understand that I’m really literal in how I communicate and they adjust to be more direct with me. But they also tell me that they do this because I’m a fucking human and I deserve to be part of the conversation. To say “they can be trained” removes the right to self determination. If you’re my friend and you want to help, you can say “Hey, could I help you to learn how to better understand when people mean it when they say ‘It’s OK’ and when they don’t mean it?” And I can be like “That would be fucking great let’s talk about how that could work!”

I understand there’s a shit ton of variation here, because Autism is a spectrum, and some people on the spectrum literally are not capable of understanding communication or communicating in anything other than violent outbursts, and that is fucking tragic. But you know what? Some people with Schizophrenia are like that too, but you don’t try to “train” that out of them. With the exception of extreme cases where there’s an immediate risk of harm to self or others, folks with Schizophrenia have the right to self-determination regarding treatment for their disorder, and the focus on treatment is on making their brains work better for them. Because they’re people, and they have that right.

Autism is unique. The right to self-determination is removed, and treatment is focused on making non-autistic people more comfortable. And that’s bullshit.

If repetitive behaviors are causing problems for the Autistic person, like bruising caused by repetitive motions, then by all means, do something about that. But back to that comment.

“They’re completely trainable in the aspects of relating if you’re specific.”

Why the fuck did you not say “If you ask a person with Aspergers directly, they can often change their behavior to do what you asked?” What the fuck did it have to be “trainable?” I’m not a fucking dog. That phrasing hurts. It’s offensive, because it denies the participation of the person with Aspergers/Autism Spectrum Disorder. If you  modify your behavior to explain a request slowly and carefully and frequently, the Autistic person can probably learn to change their behavior. That’s how you involve the person like a human.

Training is what we do to dogs. But you know what else? Good dog trainers? If the dog isn’t interested, you don’t force them.