Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: cure mentality

The Evening Temple Grandin Cured My Hypernychthemeral Syndrome

For the Love of Cows

[image description: For the Love of Cows, Digital art created by Sparrow Rose (and available on a t-shirt by clicking the image) for an art history class focusing on the work of Andy Warhol. The assignment was to create a work of art inspired by Andy Warhol’s style while visiting one of his classic themes. Sparrow chose “celebrity” for the theme and built his artwork around Temple Grandin, arguably the most famous autistic alive. The work uses the classic image of Grandin lounging peacefully with cows. Superimposed over the image are ghostly images of slaughterhouse blueprints, depicting Grandin’s crowning achievement: drafting facilities rich in the organic curves that fulfill the demands of the bovine nervous system, enabling cows to meet their ultimate destiny feeling comfortable and secure.]


I met Temple Grandin. I didn’t write about that encounter when it happened, because I came away feeling very unhappy and angry. I needed a few years to process the feelings before I could write about meeting her.

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Now I feel the need to talk about Temple Grandin.  She made some statements recently about Autistics getting our butts out of the house and getting jobs.  It horrified a lot of people, especially Autistics who can’t do that and parents of Autistics who don’t have that option.

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I don’t need to write about that aspect of things, because The Teselecta Multiverse has already done such a brilliant job of it.  I wholeheartedly recommend reading  “I Regret to Inform You That Temple Grandin Is at It Again“. Also Check out Corina Becker’s Open Letter to Temple Grandin.

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I want to talk about what it’s like being a multiply-disabled Autistic who can’t get/keep traditional employment and meeting Temple Grandin.

This is not easy to do because Grandin is such a public figure.  For many people, Temple Grandin is the only non-fiction autistic adult they have ever heard of.  I don’t want to deal with how I would feel if I tried to count or even estimate the number of times someone has said to me:

“Oh, you’re autistic? That’s very interesting.  Have you ever heard of Temple Grandin?”

– random clueless people everywhere always

As if it were possible to be an Autistic adult and not have heard of her.

Before I tell you what it was like to meet Dr. Grandin, however, I have to give you some context.  First we need to talk about one of my other disabilities, hypernychthemeral syndrome, a.k.a. Non-24-hour Sleep-Wake Syndrome or just Non-24 for short. Please don’t just skip over this part.  Understanding my non-24 is essential to understanding this story overall.

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I was born with a circadian rhythm disorder called Delayed Sleep Phase Disorder or DSPD.   My case was pretty severe.  By the time I was old enough to work, I was waking up at sunset and sleeping at sunrise.  So I worked night jobs, but I couldn’t keep them.  I could interview my way in the door because I can hold it together for 30 minutes to seem …. together enough to work at that bar or restaurant, I guess.  I don’t know.  But once I was actually working there every day I couldn’t keep up appearances full-time (because, as Albert Camus so aptly put it:

“Nobody realizes that some people
expend tremendous energy
merely to be normal.”

-Albert Camus

I suffered a lot during those years.  I spent a lot of time homeless.  I spent a lot of time living or working in places that were not the healthiest places I could have been if I’d had more options in life.

I finally decided to try academia.  I’d gotten it into my head that college would be different.  I probably got the idea from all those people who tried (unsuccessfully) to prevent me from dropping out of high school by dangling college as a carrot.  “College will be different.  People are too focused on what they’re doing to bother with bullying you.  You can get really deeply into a topic and people will admire you for it, unlike high school where they beat you down for it.”

It was a nice dream.  It wasn’t true.  The bullying was just as bad in college.  It got even worse in graduate school.  Academia was not my solution, but I was learning a lot about self-regulation and coping, so I just kept pushing through, hoping I’d be able to figure out the social muddle eventually.

-=-

Except the struggle to get a degree while still living with extreme DSPD ended up creating a situation that was sort of accidental chronotherapy.  James S.P. Fadden wrote about the danger of chronotherapy to those with severe DSPD in his article “What You Need to Know About Non-24,” saying “Non-24 also may result from attempts to treat another circadian disorder, Delayed Sleep Phase Syndrome (DSPS), using chronotherapy, in which patients are instructed to gradually delay their sleep time until they go around the clock to a more socially acceptable schedule.”

And Fadden is pretty clear about the reasons one would want to avoid developing Non-24.  He writes:

The impact of non-24 on the lives of affected patients, both blind and sighted, is considerable. It has been described as “extremely debilitating in that it is incompatible with most social and professional obligations.”

-James S.P. Fadden, quoting Dr. Oren and Dr. Wehr, writing in the New England Journal of Medicine.

So this is the thing I live with now, this Non-24, and it makes it impossible to support myself by working inside a building or for most employers.

-=-

Award-winning author George Dawes Green has non-24.  He just goes with it.  There are treatments, but they don’t work very well in severe cases and even when they do work, they require an incredible amount of self-discipline and time-regulation.  I did it for a while.  It was expensive and tedious and entrainment was as fragile as a sculpture constructed from tobacco ash.   I have also let myself go free-running like Green and can definitely see why he went with his choice, especially if his rhythm is very regular and predictable.  Mine used to be when I was younger.  Now it’s harder to predict and my sleep/wake drive is so rigid and ossifying more all the time as I age.

Fadden, on the other hand, points out that some people with non-24 prefer the “inconvenience”  of the treatments to free-running.  This is also true and I would fall into this camp if it were possible for me to actually have a life while adhering to therapy.  I found it impossible to succeed in graduate school while adhering to the strict therapy regimen required to keep my non-24 in check.

I couldn’t live my life on the therapy and I have no desire to maintain the therapy if I’m not trying to fit in to the schedule required to maintain traditional employment and social connections.  Being unemployed and living on disability is bad enough already without adding a draconian schedule of light and dark all the time.

Dawes understands the trade-off, saying, “It’s never easy. There is always that sense (that) if only I had a regular schedule, I could get so much more done. But I couldn’t be as creative. When I let myself go free — going to sleep when I want — then creativity surges through me.”

This reminds me so much of what bipolar friends have said when explaining why they don’t take medication, preferring instead to work with their body’s rhythms and honor their own process.

But free-running like George Dawes Green doesn’t resolve the strong metabolic issues that come along with my non-24.  My suspicion, though I’ve never been tested sufficiently to prove it, is that my internal clocks are still desynchronized even when I’m sleeping and waking at my body’s request when free-running while living indoors.  I need very bright sunlight to bring my body into synchrony.

-=-

My solution has come about through rather unconventional means.  I manage my non-24 by living in my minivan.  I consider this a valid medical approach to managing my non-24, every bit as much as injecting insulin and eating a ketogenic diet is a valid approach to managing my diabetes.  The longer I live in my minivan (it will be two years on May 25th) the more I realize that I have finally found the only workable solution for me.

I got the idea to move into the minivan around the same time as the conversation with Temple Grandin that I am working my way toward telling you about.  Maybe a year after meeting Dr. Grandin, I was taking an excellent class in circadian biology from Ludwig-Maximilians-Universität München through Coursera. The course, taught by  Dr. Roenneberg and Dr. Merrow, was called Circadian Clocks: How Rhythms Structure Life.

While taking that class, I learned about ongoing research at the University of Colorado in Boulder on camping and circadian rhythms.  Much of that work has been summarized in the recent article “Can’t Get to Sleep? Go Camping, Study Finds“.  The first of the two studies included in the paper this article summarizes, was published in 2013.  That study sent people camping for a week in the summer and found that spending the day outside in the sun and the night in darkness with nothing brighter than a campfire to illuminate the night caused the campers — who had entered the study with a full range of non-clinical chronotypes — to entrain to the sun together.

-=-

Now that was an angle I hadn’t considered! I was using a bank of therapy lights every day, ranging from several thousand lux to ten thousand lux.  Annoyingly bright. Painfully bright.  And useless unless I spent many hours in front of them every day.

But being outside? Not only is the sun less painful for me than therapy lights (although still a lot to handle) but a sunny day provides over ten times as many lux of brightness as my strongest therapy light.  I spend a lot of time on the hottest days in the shade, with everything around me illuminated by the clear blue sky.  That’s still twice as many lux as my most powerful therapy light.

It turns out that I sleep better when my nights are darker, but the most therapeutic thing for my non-24 (it varies from person to person, depending largely on the cause of their non-24) is to get enough very bright light in the daytime.  So I’ve got to be outside every day.

And that’s when I first started seeing the logic of living in a van.  If I could find a vehicle with lots of windows, I could wake with the sun.  Whether I was inside or outside of my house, I’d be getting lots of therapeutic light. And I could travel with the seasons, so I could continue to spend time safely living and sleeping outdoors year round.

The Colorado researchers have conducted a second study that backs up the things I’ve learned in the last two years of living in my Chrysler minivan — a cozy micro-tiny home of roughly 70 square feet.

-=-

If I might be indulged in a brief digression, I’d like to tell you that I’m writing this right now from my office.  I’m sitting on my bed with one foot on the vintage wool carpet that covers my floor.  Mr. Kitty is sprawled beside me, sleeping peacefully, fang tips just peeking out from his slumbering smile. My tiny bluetooth speaker is filling the air with the best writing music I’ve found in ages: the Galactic Caravan channel on Pandora.  The sun has reached the  nine a.m. point in the sky: not quite at 45 degrees from horizon this time of year.  Periodically, a gentle breeze comes through the slightly open window.  I’m parked on a particularly appealing slant — it keeps my mousepad flat so my mouse doesn’t keep sliding around — next to the gym where I will be showering when I finish writing this.  The weather is lovely.  Tomorrow is Easter — Eastern and Western coincide this year.  I’m eating peanut butter chocolate Keto Chow for lunch.  Life is good.

-=-

One thing I have learned is that the winter sun is strong enough to keep me entrained as well.  This is what the Colorado researchers also found in their second study: the winter sun is sufficiently potent when it comes to sleep entrainment. Moreover, they found that camping for a weekend produced 69% of the circadian shift that the full week had produced in their earlier study.

In my experience, the sun is necessary.  Fully overcast days only provide one or two thousand lux of light.  That’s far weaker than the therapy lights I used to use.  And they barely worked.  So I lose my entrainment if there are too many overcast days in a row.

And, over time, I’ve figured out that my magic number is three.  Three days living indoors or in constantly rainy and overcast conditions will cause my body and sleep to desynchronize.  And three days out in the sun, living and sleeping outdoors in good weather sews everything back up again.

The sun is so powerful that when I moved into my minivan full time on May 25th, 2015, I was at a phase in my sleep-wake cycle where I was only awake during darkness.  It would normally take me around two weeks of patient waiting and carefully monitoring therapeutic light and darkness conditions to swing from that to waking up at sunrise.

I was waking at sunrise by May 28th, 2015.

-=-

Reporter Emily Laber-Warren had started studying my case in fall of 2014, to add color to her Scientific American Mind article about circadian rhythms and sleep.  She was still actively asking me questions to verify details when I was unfurling my natural therapy wings at that first campsite in Hemingway’s fishing country, so she got to share my excitement at the shocking speed with which my body entrained to the sun.

In her article, Out of Sync, she wrote of me:

Managing non-24 made it impossible to hold down a job, but Jones has a character, shaped in part by autism, that is fundamentally optimistic and animated by passionate, sustaining interests. After leaving graduate school, she self-published a book of personal essays and a CD of original music. Then she conceived a radical new life plan. Jones decided to give up her apartment in Pocatello, Idaho, and drive cross-country, becoming a modern-day nomad—sleeping in a tent, indulging her love of nature, and visiting train yards, science museums and the graves of famous writers along the way. Her goal: to arrive on the East Coast to meet her love for the first time—the person whose advice helped to stabilize her rhythms and with whom she has developed a long-distance romance. If things work out, she can settle close by; if not, she is mobile.

But Jones had an additional motivation for pulling up stakes—a theory that living outdoors, as our ancestors did for millions of years, experiencing the full force of the sun every day and true darkness at night, might cure her circadian disorder. “It would be pretty sweet if a primal hobo life does automatically what modern medicine struggles to accomplish,” she wrote in an e-mail before her May departure. By June, when this article went to press, her rhythms seemed to be naturally and effortlessly stabilizing to a regular 8 a.m. wake-up time— but this progress disappeared whenever she visited friends and slept indoors. “It’s a shame that sleeping outdoors is such a radical ‘therapy’ that few will be able to replicate it,” she wrote, “because I am overjoyed with how well it is working for me.”

There is a lesson here for the rest of us, with our overextended, brightly lit, Starbucks-fueled lives. Modernity has made it possible to stretch beyond the confines of the 24-hour day, but in the process we have become untethered from the fundamental pulse of our planet. Science is revealing that we do so at our own risk.

Some things have changed since Laber-Warren’s article was published.  I no longer sleep in a tent.  The romance ended.  And my pronouns are he/his/him now.

But much has remained the same.  I still love my “primal hobo life” and hope to be able to continue my nomadic life for many years to come.  I wake up with or before the sun every day now.  I’ve cobbled together a delightful mobile office inside my minivan and am getting better all the time at living fully within a minimalist, mobile lifestyle. My current goal is to shape a life where I maximize my writing time and my time spent in nature with a mid- to long-term goal of becoming completely self-supporting.  I sense it is within my grasp. I’m more optimistic about achieving that goal than ever.

-=-

So that was enough set-up, I think.  You had to understand my non-24 and the huge impact it has had on my life and the extremes I have gone to in addressing how to have a satisfying life while living with non-24.  I wanted you to see how much I want to work and how excited I am as each piece of the answer to my struggle falls into place. You needed to understand how much my circadian rhythm disorders have shredded my life and how much work it has been to craft a life where I have a chance to succeed if I just focus on what keeps me writing, fed, fueled, and healthy.  For me, that is living in a minivan and seasonally migrating while writing all the time and periodically spending time with good people.

So… back to telling you about when I met Temple Grandin.

She was speaking at my university and I was very excited to hear what she had to say.

The first thing I learned was access clash.  Dr. Grandin immediately moved the sign interpreter to the back of the stage.  She can’t focus with anything moving around in her field of vision.  I can relate to that.  I have some issues with visual movement.  But I couldn’t be happy about moving a sign interpreter to the back of the stage.  They belong out front and easy to see.  I understand that Dr. Grandin was the person we were all there to see, so her access needs were most important, but I would have a hard time nearly completely removing someone else’s access in order to accommodate me.

I learned something valuable from her actual presentation.  She talked about the different types of thinkers, saying that not all Autistics think in pictures like her.  She listed off the kinds of thinking and I immediately recognized myself when she described pattern thinkers.  So I learned something new about myself at her presentation.

-=-

During the presentation, I became very glad that I had ended up with a balcony seat.  I was full-body rocking as I listened to Dr. Grandin speak.  Someone seated down on the floor was rocking, too, and Temple had them removed to watch from another building on closed-circuit television.  Again, the motion was disrupting her presentation.

Because I hadn’t had to leave the building, I was able to get up and walk to the exit while I watched her field questions from lines of people walking up to the microphones.  I noticed, then and at other points during the evening, that Dr. Grandin has a lot of assistants helping everything move smoothly.  I hovered near the exit because I knew there would be a book signing and I wanted to get in line quickly to get my copy of Animals in Translation signed.

-=-

I didn’t like a lot of the answers I heard.  Her childhood consisted of that intensive, 40 hours a week, ABA therapy a lot of us Autistics warn against.  As a result, she believes what worked for her is the best way to treat autistic children.

It’s not that unusual a stance, really.  Think of the people you’ve heard advocating for spanking children, saying things like, “look at me.  I was spanked as a child and I turned out just fine. ” Dr. Grandin turned out fine, but she doesn’t examine too closely whether that was because of or in spite of the therapy.

Temple Grandin’s mother was told to institutionalize her, but refused.  That is deeply admirable, but also a sign of privilege.  Most people could not afford the therapy back then.  Throughout Temple Grandin’s life, privilege has provided a buffer against some of the harshness the world has on offer for Autistics.

Or, as I wrote elsewhere:

“As a result, Grandin clashes with:

  • people from less advantaged socioeconomic positions than hers,
  • people with multiple disabilities that require a delicate dance among often conflicting accommodations,
  • people who are opposed to ABA and other compliance training,
  • and all people who do not have access to the things that must seem perfectly basic, normal, and ordinary to someone born in the 1950s as a cis, asex, white, very financially comfortable, Autistic woman with anxiety and no other significant disabilities.”

So, yeah. As you can imagine, I did not like most of her answers to people’s questions.  I kind of feel like just leaving it at that. I don’t want to disrespect Temple Grandin.  She works hard.  She believes in what she’s doing.  She has been tremendously successful in the field of animal agriculture and I respect her hard work.

But it was hard listening to some of the things she said.  And it’s even painful to recall some of it.

-=-

I wanted to get my book signed, so as soon as they finished the question and answer period, I speed-walked up to the tables to wait for Dr. Grandin to come around and I managed to be the first in line.   That was focus on my part, for sure.

I had rehearsed what I wanted to say to her, because I wanted my words to be haiku-tight, not wasting any time while still conveying a world of meaning behind the words.

“Hello, I’m Autistic, too, and I’m a student here.
Thank you for what you did for the cows.”

I had rehearsed it carefully and in my imagination, she would say, “thank you. How do you spell your name?” with her pen hovering above a blank space in the front of the book, waiting to write my name and move on to the next person.  Temple Grandin, I reckoned, would be very busy signing books now.  I wanted everything to go smoothly because I didn’t want to waste any of Dr. Grandin’s time.

-=-

But it didn’t go smoothly at all.  As you can see from the article about Temple Grandin that others like Teselecta and Becker are upset and writing about, Dr. Grandin is positioning herself as a career counselor these days.

So I got my first sentence out, but she interrupted me and I never got to offer gratitude on behalf of cattle everywhere.

“Do you have an internship?”

I blinked. Not the response I had expected.

“No, I’m in graduate school and will have to do teaching hours here as part of my degree,” is what I would have said if I’d been given a chance.  As it was, I only got the first syllable out when she swept in again, to lecture me about the importance of an internship, because Autistic people need to have real-world work experience before they leave school or else they will flounder.

-=-

Which, I’m sure, is great advice for a lot of Autistic college students.  But I am multiply disabled and at the point that I went to see Dr. Grandin’s presentation, I was trying to figure out, navigate, and self-advocate conducting my teaching hours in spite of my non-24.  I wanted to do my teaching hours through asynchronous online education, as many of the classes I’d taken in the economics department were conducted.

But the political science department had not yet ventured into online education.  Because my first class taught would have to be as an assistant and because no professor in my department had made the move to asynchronous online education, my accommodation was not, legally speaking,  a reasonable accommodation. Legal precedent had already established that requiring a brick-and-mortar school to convert to online education when none had been conducted previously was unreasonable. And when I brought up the topic of asynchronous online education, the professors of my department laughed, so I knew it would be a losing battle.

And at the same time, the non-24 was running me so ragged my grades were steadily dropping. As Emily Laber-Warren notes in the Scientific American Mind article featuring me, I had gone from being a dean’s list student to a transcript covered with Ws and eventually failed my first class.  I was going through hard times when I met Temple Grandin, and her pressure to get an internship left me stuttering and unable to focus my thoughts enough to say much of anything coherent.

-=-

And as I struggled to make my struggles into anything resembling a sound bite, or even just a sound snack, Temple Grandin cut to the root of all my problems and announced her cure with eager pride:

“Just go to Target and buy yourself a really good alarm clock!”

– Temple Grandin, single-handedly curing an orphaned neurological disorder

Wow.  My circadian specialist had studied sleep for years and practiced exclusively as a sleep specialist — no distracting animal agriculture on the side for him — and he had missed such a simple and affordable answer.

And that is how Temple Grandin cured my hypernychthemeral syndrome.

 

Why I Call Myself Autistic

Tree at the Antietam Graveyard

image description: a tall, bright tree at a family graveyard on the Antietam Battlefield. The photograph has been put through post-processing to frame the tree in light while darkening the borders of the picture. Photograph copyright 2016, Sparrow Rose Jones

A reader named Karin posted a lengthy comment on my blog post from two days ago and I felt that all the time and effort that went into it deserved a full blog response. You can read Karin’s full comment under the blog essay What Is a Disorder?

Those of you who have read my latest book, The ABCs of Autism Acceptance, will recognize that I’ve covered this ground already, in my chapter “I is for Identity-First Language,”

 

Thank you, Karin, for your thoughtful and courteous comment. I also have anxiety, C-PTSD, and depression. These acquired neurodivergences are not, in my case, traits I was born with but neurological responses to abuse and ableism, both of which I’ve been handed heaping helpings of throughout my life. I am sorry to hear that you struggle with these very challenging neurodivergences as well.

 

I would tend to agree that using or preferring person-first language doesn’t necessarily mean a person views the trait being described as a bad trait, but most often it does and I see indications from your words that you do feel that person-first language is necessary to try to linguistically separate a person from an undesirable trait. Specifically, your response to the choice so many of us have made to refer to ourselves as Autistic shows that you feel autism is a highly undesirable trait that should be held as far away from a person as possible. I will explain further shortly; I am addressing your points in the same order that you made them.

 

You write, “I want others to see me as a whole person. My disability is PART of me, yes, and it affects many choices I make…but I also have personality traits and interests that have nothing to do with my disability.”

 

This is where Autism (and many other neurodivergences) are not like many other disabilities.

 

As an Autistic, I am a whole person. “Autistic” is a label of identification that contains full personhood within it, much as many other labels of identification. If I called someone a “woman” or a “Muslim” or “Black,” would you feel that it was important for them to use person-first language because someone might mistakenly forget that they are a whole person? Instead, perhaps, I should call them a “person with femaleness” or “a person who follows Islam” or …. I’m having a hard time with this last one, because every person-first construction I can think of feels so wrong. “A person with Blackness” is about the best I can come up with. My apologies.

 

These constructions feel awkward and wrong and sometimes even a bit insulting because….well, because they are. I am trying to separate out someone’s gender, religion, or racial identity from their personhood. I am suggesting that these core traits of personal identity somehow obscure the fact that women, Muslims, and Blacks are whole people. Ridiculous, right?

 

But people seem to feel so differently about Autistics. Is it because we’re disabled? I don’t think so. Do people question whether a wheelchair user is a whole person? I’m sure some ignorant people do, but most people don’t — as evidenced by the linguistic construction: a wheelchair user, not a person with a wheelchair (although I have seen “a person who uses a wheelchair” but not exclusively.) The same goes for someone who’s Blind or Deaf. We don’t tend to talk about a person with blindness or a person with deafness.

 

It is because Autism is a developmental disability and sometimes an intellectual disability. This is where I see people insisting most fiercely that person-first language is important to remind others that they are talking about a whole person. We have a cultural prejudice against those of us with neurological disabilities. Because the brain is the seat of pretty much everything — our senses, our movement, our thoughts, our memories, our drives, our communication — people take an extremely ableist view that a brain that is not like theirs might be the seat of someone who is not fully human.

 

That’s so important, I want to say it again in its own paragraph: people get so insistent about using person-first language to “remind” the world that Autistic people are whole people because they don’t fully believe it themselves.

 

Why would anyone need to be reminded of our personhood? Because people don’t really believe we have personhood. No one needs to insist that you remember that women are people. It’s self-evident that women are people, right? (Okay, maybe not always. But among reasonable people, yes, it’s self-evident.) Person-first language is a perfect example of Gertrude’s exclamation in Hamlet: “The lady doth protest too much, methinks.”

 

Another thing that’s different about autism, compared to many other disabilities: you talk about having personality traits and interests that have nothing to do with your disability. My disability is that I have a type of brain that is in the minority and I live in a society that looks down on those of us who are in a neurominority. So everything I do and love and think and feel gets pathologized as a “symptom” of a “disorder”  because it all comes from my beautiful but misunderstood brain.

 

You see, I actually am my brain and I am autism and all my personality traits and interests come from my Autistic brain and that’s why I refer to myself as Autistic rather than trying to create some kind of artificial separation between myself and …. Myself. It makes no sense to try to separate myself from autism because I am my brain and my brain is Autistic. And my brain is beautiful and wonderful and not something I want to try to disown by using person-first language to try to create some kind of pretense that my self is not my self due to shame about my self or a false belief that being my self makes me less than a whole person.

 

Rather than using unnatural language to try to convince others that I am a whole person (and I don’t know how I could convince someone I am a whole person by using the language of shame and lack of personhood) I prefer to do the work I’m doing right this minute: the work of explaining to people that their belief that Autistics are not whole people is illogical and bigoted and needs to stop. We should not have to hold ourselves out away from ourselves as if our identity were soiled underwear in order to be recognized as the whole people we are. It is an oppression to insist that we will only be viewed as whole people by disowning our own brains.

 

So it is a very different thing for someone with a “physical disability” (I think that’s a false dichotomy, but that’s another essay for another day) to use  person-first language, because a diabetic *can* be considered separately from their diabetes or a person with Ehrler-Danlos Syndrome (a connective tissue disorder I have) is a person completely independently of what their tendons and ligaments are doing. But my disability is one of cognition, perception, communication — it’s my brain that is different from the mainstream and my brain is me and using person-first language to try to distance me from my brain is actually denying my personhood rather than affirming it.

 

Karin writes, “I do have a question about the language I see many autistic people including yourself often using – “Autistics.” I understand calling yourselves A/autistic people, but not autistics. To me as a reader it sounds dehumanizing and distancing. Can you explain this so I can understand? I just cannot imagine ever calling myself a disabled, a cerebral palsied or other people with my condition cerebral palsies. I understand the concept of identity first in general, but why remove the person part?”

 

If it sounds dehumanizing and distancing, it is because you have internalized the ableism I was just speaking of — the idea that being Autistic is being lesser in some way, particularly in the area of being human. It is intriguing to me that you call identity-first language “distancing” when it is person-first language that strives to distance me from my own brain.

 

If you feel that calling myself Autistic has “removed the person part” you are admitting that you feel Autistics are not whole humans and require additional linguistic humanity to be added. By referring to myself by my neurotype, I am saying, “I am this type of human” just like a person referring to themselves by their gender says “I am this type of human.” No one suggests that identifying as “man” or “woman” has removed the person part because no one feels it needs to be added in the first place. Believing that Autistics need to have person added to our identity reveals an underlying belief that it isn’t already there, rolled into the definition the way it is for men, women, and all gender identities.

 

Karin writes (in reference to depression, anxiety, PTSD, etc.): “We need treatments. Cures. Adequate healthcare coverage for intensive therapy when needed, better medications that don’t have bad side effects or cost a fortune. I don’t think it is wrong to pursue treatments or cures for conditions while also saying “I am a valuable person as I am and deserve respect and opportunities, not stigma.””

 

I am not against taking medication for depression or anxiety or PTSD I am not against therapies. What I am against is people being defined as “mentally ill” against their will and forced to take medications. I can’t take medication for depression because the medication makes me very sick. I have required hospitalization for the effects of anti-depressants. I don’t think it’s wrong to pursue treatments for depression so long as it is up to the person to choose whether to take mind-altering drugs or not.

 

But I am very much against seeking a cure for autism. My brain has 100 billion neurons and there is no way to re-wire them and make me not-autistic. There is no way to cure autism in a living person. Autism is a type of brain and you cannot change my brain.

 

The only way to “cure” autism is to prevent it from happening and that’s exactly what is happening with genome projects like MSSNG. The aim is to determine autistic genetics so that pre-natal testing can determine which babies are developing autistic brains so that their mothers can be counseled to abort them. This is not science fiction. This is exactly what has happened with Down Syndrome. Pre-natal testing for Down Syndrome results in pressure to abort when the test comes up positive. Attempts to “cure” autism are thinly-veiled attempts to create a world where people like me are no longer born in the first place.

 

Think for a moment how that makes us Autistics feel, watching everyone hustle to funnel millions and millions of dollars into building a world without people like us while the vast majority of us are so under served that we die from preventable diseases and live in abusive situations, sub-standard housing, homeless, or in prison because no one had any better idea of where to warehouse us.

 

A “cure” for autism is not like a cure for Ehrlers-Danlos Syndrome. I would think it was grand if some gene therapy could cure my connective tissue disorder. I live with a lot of pain every day. My connective tissue is not “me.” I don’t think with it. I don’t dream with it. It is strictly for maintaining this physical body and moving it around, much like you describe when you write: “The majority of problems cerebral palsy causes for me can be alleviated by better wheelchair accessibility, improved home care services, and the ending of assumptions and bias against people with physical conditions.” That is how I feel about my EDS. It is not at all how I feel about being Autistic. My EDS is painful and impacts my mobility, but Autistic is who I am, to the very core.

 

Karin writes, “To be clear, I’m not championing research to cure autism, and especially not if it would involve abortion or any coercive treatment. I think we would lose something as a society/world without autistic people in it. But I also can understand that there are some autistic people who would want certain treatments, like perhaps something to make sensory stimuli less overwhelming.” and “I think it’s important that we don’t assume that just because we don’t want something, that doesn’t mean others won’t want it either.”

 

I have devices to make sensory stimuli less overwhelming. I am not against treatments.

 

But I am strongly against millions and millions of dollars being poured into a “cure”.

 

Helping me to navigate the world with less pain and more understanding is called accommodation and I am a strong supporter of accommodation. I support everything that makes life easier for Autistics. The problem is that “cure” and “treatment” are synonymous with things that make life harder for Autistics or erase us from the world completely.

 

I will never support “cure” because that can only be accomplished through genocide.

 

I am cautious in my support of “treatment”  because that word is used to describe so many tortures and torments that cause the depression, anxiety, and PTSD so many of us Autistic people live with.

 

It is our existence and core identity that are under attack and so long as this war against Autistics continues, I will boldly and proudly continue to identify as Autistic. I refuse to linguistically set my being off to one side so that I can present a socially-acceptable ghost of who I am to a society that will never fully  accept my personhood so long as I am working to hide my whole, natural humanity, no matter how many times I toss the word “person” at them.

 

I choose to live with integrity and authenticity, claiming my beautiful brain as my own. I am Autistic and I am proud of who I am.

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