Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: media representation

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.

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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.

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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.

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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.

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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.

 

Stop “Diagnosing” Donald Trump

campfire

[image description: a small campfire burning in the dark night. Copyright Sparrow R. Jones, 2017]


Everywhere I turn, it seems, someone is calling the current United States presidential administration “crazy” or “insane.”

Do you not realize that these are slurs along the lines of The R Word? Do you not realize that everything I have ever said about the R Word applies to the C word and the I word as well? Using words that describe vulnerable populations to describe the actions of those who are not members of that population who are engaging in behavior that displeases or distresses you is the verbal equivalent of picking up a disabled person to use them as a bludgeon. You’re not likely to hurt your target but you are crushing those of us who become your lazy go-to when you can’t find the words you really want.

“But wait!” someone always responds. “You don’t understand! He really is crazy! He’s got Narcissistic Personality Disorder! A psychology professor said so!”

First off, that professor was behaving unethically if they diagnosed Donald Trump without even meeting him.  There is a rule in the psychiatric professions called the Goldwater Rule, so called because it arose after similar speculations were made about Goldwater.  Section 7.3 of the APA Code of Ethics says:

On occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

That means that it is unethical for a professional to announce a diagnosis of Donald Trump. And if you are not a professional, you are not qualified to diagnose Donald Trump.  The only people qualified to determine if a person has a psychiatric disability are trained professionals and the individual themselves.  Furthermore, revealing a person’s diagnosis without their explicit permission is a violation of HIPAA regulations specifically and a violation of privacy in general. No one has the right to disclose another person’s medical information without their consent.

Secondly, if someone you view as having authority has told you that Donald Trump has Narcissistic Personality Disorder (NPD)  (or if you have taken it upon yourself to  lay-diagnose him as such), you are wrong.  The doctor who wrote the diagnostic criteria for NPD  has publicly stated that Donald Trump does not meet the criteria. Dr. Frances goes a step further and explains why these casual lay-diagnoses of public figures are so harmful. You really should read his words: This Doctor Nailed The Problem With Diagnosing Donald Trump With Mental Illness.

I have even seen some people suggesting we “push for Trump to submit to psychiatric evaluation.”  Forcing psychiatry on an unwilling person is the height of human rights violations.  I never thought I’d find myself in the position of defending and protecting Donald Trump, but society has put me here by insisting that the basic human rights we hold so dear do not apply to him. Call him evil, call him authoritarian, call him a fascist …. but do not suspend his human rights unless you are willing to see your own human rights suspended next.

It is unethical to diagnose a person without an examination, regardless of credentials or lack thereof.
It is a human rights violation to attempt to force a person to submit to psychiatry against their will. Some reading in the psychiatric survivor literature will help you to understand what a gross violation it is.
Fighting dangerous leadership by weaponizing psychiatry against the president will only serve to hurt vulnerable Americans as those arrows will be twisted by the government and turned against us.
We already have a Vice President who supports the use of involuntary “anti gay therapy” against minors. We do not need to use their evil tactics against them. We can fight evil without becoming evil.
Study authoritarian regimes in other countries and other decades and you will see psychiatry repeatedly being weaponized against the resistance.  Audre Lord said “the master’s tools will never dismantle the master’s house.”  Nick Walker brought that philosophy into the battle against the pathology paradigm with the essay “Throw Away the Master’s Tools.”
Authoritarian dictators are the ones who routinely weaponize psychiatry to silence the Resistance. Those aren’t the tools we need to be using to dismantle the master’s house.

Autism Speaks Hasn’t Really Changed Anything

millipede

A millipede at the Antietam Battlefield. It’s coming right at you! Photograph copyright 2016 by Sparrow Rose Jones.

You can’t have missed it. It’s everywhere you look: the announcement that Autism Speaks has dropped the word “cure” from its mission statement. It’s being lauded as a great sea change in the organization’s approach to autism and a sign that Autism Speaks is finally starting to listen to the activists who have rejected the cure mentality for so long and called on Autism Speaks to reject it, too.

Except it’s not a sea change. It’s not a change at all. Autism Speaks hasn’t changed a damned thing except their wording.

Look at their  mission statement. The cure mindset is still front and center:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.

from: https://www.autismspeaks.org/about-us/mission

Allow me to unpack this shining new mission statement.

Autism Speaks is now promoting solutions instead of cures. Except that one of their definitions of solutions is not only synonymous with what “cure” actually meant, it is even more chilling with the new wording. But I’m getting ahead of myself; you’ll see what I mean further on in this essay.

“Cure” was code language — something called a “dog whistle” because it’s language meant to only be truly understood by certain people just as dog whistles can only be heard by certain ears.

To the general population, “cure” sounds great. When you hear the word cure, you naturally think of an alleviation of suffering. You think of a cure for cancer. You think of the cure for the common cold. You think about kind-hearted, humanitarian scientists coming up with ways to soothe the discomfort and fend off death. Who could possibly be against a cure, right? Cures are good and make people happier and healthier.

But what does a cure for autism look like?

Autism is a difference in the structure and function of the brain. All the behavioral differences you see, all the perception differences we experience are informed by differences in neurological structure and function. The brain is the seat of our individual human identities. Autism is the ownership of an autistic brain. Curing autism would mean changing our brains.

Maybe it could be done carefully and someone could cure the pain and nausea I experience when I hear certain sounds without removing the musical parts of my brain. Maybe I could be cured so that I could listen to a soprano singing without my whole body trembling in pain but would I still have been able to learn to read sheet music at age four and play Chopin sonatas on the piano and compose and record my own music? Maybe.

Maybe I could be carefully and precisely cured so that I don’t regularly lose the ability to speak. It would be nice to not have to type to communicate sometimes. People aren’t very patient when I can only communicate by typing. They talk over me, they ignore what I tell them, they ask me five more questions while I’m still typing the answer to their first question, overloading and overwhelming me. Maybe I could be cured so that I never lose speech again without removing the parts of my brain that make me a skilled writer. I am as skilled with the written word as I am because it is my first language and the spoken word is my second language. Maybe I could be cured so that I could speak all the time, reliably, without losing my writing skills. Who would I be if I weren’t a writer? It is such a deep part of my personal identity, crafting written words. Anyone who has met me, heard me present, watched my YouTube videos knows that I speak well but I write so much better than I speak. Maybe my intermittent mutism could be cured without destroying my writing. Maybe.

You can see where I am leading you, right? There really isn’t a cure for autism. Once my brain was wired this way, my life trajectory was always going to be divergent from the bulk of life trajectories around me. Once my brain was wired in an autistic configuration, a cure would mean untangling my neurons and pasting them back together differently. Curing my autism would quite literally mean giving me a different brain. Giving me a different brain would quite literally mean erasing who I am. A “cure” for a living Autistic person is impossible because once you make such major changes to a person’s brain, you haven’t cured them; you’ve removed them and replaced them with a different person who might (or might not) share their memories. If you enjoy reading science fiction, read Elizabeth Moon’s novel, The Speed of Dark, for an eerily realistic example of what a cure for autism might look like.

So now I’m hearing some people praising Autism Speaks for removing the word “cure” from their mission statement, but has anything really changed? Let’s look at their new word, “solution,” adn see why it’s much more frightening to me than “cure.”

“Autism Speaks is dedicated to promoting solutions” …. let’s enumerate those solution goals:

1. across the spectrum
2. throughout the lifespan
3. for the needs of individuals with autism
4. for their families
5. through advocacy and support
6. increasing understanding and acceptance of autism spectrum disorder
7. advancing research into causes for autism spectrum disorder and related conditions
8. advancing research into better interventions for autism spectrum disorder and related conditions

And, for comparison, here is the old mission statement:

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

1. Across the Spectrum

If these words mean what are claimed, this would be a sea change worthy of advertising. I am suspicious of all the focus on the removal of the word “cure” when “across the spectrum” is a much bigger change. Why is no one talking about this?

For years, those of us Autistics who could communicate using words, whether spoken or typed, were told to sit down and shut up. Autism Speaks wasn’t talking about us, we were told. They were only talking about those ‘poor unfortunates’ who could not speak for themselves. Sure, we got counted whenever Autism Speaks wanted to share the huge numbers of millions of Autistics they needed funding to help. They wanted us to be counted as warm bodies for fund-raising purposes. They just wanted us to be silent warm bodies. Shut up, Autistics, you’re getting in the way of us helping.

If Autism Speaks is truly committed to offering solutions “across the spectrum,” they need to look at how many of us are homeless and hungry. They need to look at how many of us are slipping through the services cracks because there’s nothing out there for us. They need to look at holding universities accountable for the accommodations Autistic students need to succeed and thrive in an academic setting. There are massive unmet needs among the Autistics that Autism Speaks has traditionally told to shut up. If we really are part of their mission statement now, are they going to make good on that? Or are those just words designed to shut us up yet again. “There, we mentioned you in our mission statement. Now sit down and shut up.”

Put your money where your mouth is, Autism Speaks. And by that, I don’t mean the $1,167,786 spent on catering.1

Autism Speaks likes to make you think they are giving a lot of direct financial support to Autistic people and their families by rolling several categories together in their pie charts. They told us they spent $24 million on “family services, awareness, and advocacy”2 because that hides the specifics.

It hides the actual amount that went to family services: $4.6 million

Versus the amount that went to advertising: $52 million

It hides how much of that advertising, “awareness and advocacy” was spent on promoting programs like MSSNG that teach the world that Autistics are “missing pieces.”  Notice what they chose to leave out of the word “missing”: We Autistics are missing “I” – identity, humanity, self.

And what are the missing pieces that the MSSNG is discovering? Autism Speaks is sequencing thousands of genomes. “The best research minds in the world are going to mine this database of DNA so we can uncover and understand the various subtypes of autism. Then we can get to work developing customized treatments and therapies so we can improve the quality of life for so many people who need help.” – Liz Feld, President, Autism Speaks.3

Customized treatments and therapies? This would be great news for everyone, Autistic or not, if that’s what they’re actually doing. One-third of Autistics have epilepsy, so people with epilepsy would rejoice because those customized treatments would help them, too. As many as three-quarters of Autistics have clinically significant sleep disorders and that means the 25% of the general population with sleep disorders would rejoice because those customized treatments would help them, too. If MSSNG is really doing what it claims to be doing, the entire world should rejoice because the things we Autistics suffer with are not autism-exclusive things. Every treatment or therapy customized to our genetics will help thousands of non-autistic people who suffer those same things.

Except I’m not convinced. What are you developing, Autism Speaks? Will I be able to go get a genetic test and get targeted treatment for the digestive distress, neurological circadian rhythm sleep disorder, dyspraxia, anxiety disorder, and connective tissue disorder that are my genetic hitchhikers, the traveling companions of my autistic genetics? That would be a dream come true — not just for me, but for the millions of other people of all neurological profiles who also suffer these conditions and may share the particular genetics related to them.

I think MSSNG is more likely to be part of that “cure mentality” Autism Speaks claims it has jettisoned by changing the wording of its mission statement. I think MSSNG is a way to detect autism in the womb. I think MSSNG is a way to provide a “solution” to autism….. I think MSSNG is a way to make most future Autistic children be as missing as the estimated 80% of Down Syndrome children who are not born, thanks to genetic testing.

Prove me wrong. Fix my digestion and connective tissue and my sleep patterns that are too messed up for me to be employable. Please, do prove me wrong.

I am part of that “spectrum” you now speak of reaching across. Show me the solutions.

2. Throughout the Lifespan

This is another “I’ll believe it when I see it.” The entire world still thinks of children when they think of autism. They think it so much that we don’t ever really grow up, we become “adult children.” If Autism Speaks has a new commitment to “solutions” throughout the lifespan, let’s start seeing the word “adult” appearing more often. Alone, as a noun. Not as an adjective to modify the noun “child.” We grow up and we need help.

What are you going to do about the 10%+ of Autistic adults who end up in the penal system? what are you going to do about the 10%+ of Autistic adults who end up homeless? What are you going to do about Autistic adults who are deemed “too high functioning” to get services but “too low functioning” to be helped by Vocational Rehabilitation? What are you going to do about the Autistic adults languishing in sheltered workshops because no one cared enough to introduce supports to help them into the mainstream workforce with real wages? What are you going to do about the Autistic adults stashed away in institutions who could be living independently in the community with adequate supports?

You, Autism Speaks, are vacuuming up all the money from all the local communities, to the tune of $122 million per year and you are giving back only $4 million of that in actual services. You can change the wording of your mission statement all you want, but until you start helping the thousands of Autistic adults who are homeless, hungry, or imprisoned because there was nowhere for them to go and no services for them (because there was no money to help them, since it all ended up going to Autism Speaks) then your new mission statement is nothing but words designed to provide a louder and more elegant “sit down and shut up” to the inconvenient Autistic people who actually need the help you love to pretend you are giving them.

3. For the Needs of Individuals With Autism

Oh, yes. About our needs.

We need schools to accommodate us, from pre-school to university level. We need the supports and accommodation to attend school within the community, not segregated. We need programs that understand that our academic needs and our social needs can be on radically different levels and that both those needs must be addressed or you have failed us and, by extension, all of society.

We need to be spoken of in respectful terms, not called a tsunami or a public health crisis. Not to have our beautiful brains compared to cancer, AIDs, and diabetes. Not to be called a disease. Not to be used as inspiration porn. Not to be portrayed as the haunting menace that will destroy families, society, the economy, and all of civilization.

We need real access to healthcare, not to have our co-occurring conditions dismissed as “that’s just what autism is like” and not to be subjected to quack treatments like bleach enemas, worms, chelation. We need medical professionals who will take the time to understand our healthcare access barriers and work with us to overcome them. We need to have it understood that having spoken communication does not automatically erase our support needs and we need to have it understood that not having spoken communication does not automatically erase our intelligence and autonomy.

We need safe places to live, access to people we love, adequate healthy food to eat. We need to not be isolated from the community. We need to not have our autonomy overrun. We need help with employment for those of us who can work and we need help with financial support for those of us who cannot. All of us need support for the activities of daily living, and we need to have our support needs recognized, understood, and respected even though they can look very different from one person to the next.

And all that’s just for starters. Can you address this baseline, Autism Speaks? It’s in your mission statement now. We’re waiting.

4. For Their Families

The number one thing our families need is to see us provided for. Our families need the peace of mind that comes from knowing we will be okay when they have passed on. Our families need to see us being educated appropriately. Our families need a level of social understanding of autism that lets them not get harassed by neighbors for living with us in their homes, that lets them go shopping or to a restaurant with us without being judged as bad parents, that lets them hire a sitter to watch us for a reasonable price.

Presenting us as terrible burdens does not help our families. Calling us a public health crisis does not help our families. Encouraging traumatizing ‘therapies’ that create anxiety problems and PTSD in us does not help our families.

5. Through Advocacy and Support

Yes, what kind did you have in mind? We don’t need any more of that ‘advocacy and support’ like the “I Am Autism” video. We don’t need to be told we’re “MSSNG” (the two Is that are missing are the ones they are trying to pull the wool over.) We don’t need to be called a tsunami or called lepers or have it said that we are so pure and innocent because we don’t care about money. (I can show you an awful lot of Autistic adults who care an awful lot about money because they don’t have enough to pay the rent.)

How do you intend to advocate for us now? Is your support going to change? Are you going to spend more than the pitiful 3% of your income you currently spend on services for us and our families? Do the people who lovingly volunteer their time and resources to organize your fundraising walks realize that only three cents of every dollar they raise is actually going back to the community?

You’ve got to do much better in your advocacy and support than your track record, Autism Speaks, for anyone to take this new mission statement seriously. Where are your solutions that come through advocacy and support? What are you planning to solve?

6. Increasing Understanding and Acceptance of Autism Spectrum Disorder

This is where your alleged solutions start to sound like little more than buzzwords, Autism Speaks. You have latched on to the word “acceptance” without understanding what it means. I know you don’t understand what it means because you never would have listed this as one of your solutions if you really understood “acceptance.”

Yes, we have been calling for acceptance. We have been calling for acceptance of Autistics! You are calling for acceptance of Autism Spectrum Disorder? Seriously?

Accepting Autistics means accepting that we often look and sound and choose differently than other people but we are no less worthy of dignity and respect. Accepting Autistics means working with our patterns of strengths and struggles to help us find our way in this fast-moving and chaotic world. Accepting Autistics means making room for us at the table. We deserve to live independently in the community, with whatever supports we need to accomplish that. We deserve a chance to work, to go to school, to have a family, to shape a meaningful life — meaningful from our perspective and our needs and desires, not meaningful according to your judgment of how you think we should live.

You are calling for accepting autism spectrum disorder. What does that even mean? How does that help us? We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us. If you have real solutions, they will be about accepting us, not about accepting a disorder.

7. Advancing Research Into Causes for Autism Spectrum Disorder and Related Conditions

Here! Here! Here! This is it right here! This is why your new mission statement is far more terrifying than calling for a “cure.” This is why your emphasis on “solutions” is so chilling to me!

You want to study the causes of autism? You are dedicated to promoting solutions related to finding the causes of autism??? If you find out what causes autism, what solution are you planning to implement? Why do I keep hearing the word “final” every time I think about your solutions for the causes of autism? This is why I do not trust your shiny new mission statement. This is every bit as much entrenched in the cure mentality as your old mission statement. This is a piercing dog whistle for pre-natal testing and abortion.

This is why I read your new mission statement and I still see a huge organization draining all the money from local communities — money that could have helped us, our families, our schools, our vocational aspirations, our future — and using that money to research how to kill us before we are born.

This is why I say you have not changed a damned thing. You have slapped a fresh coat of paint on the same terrifying eugenics agenda you’ve always had, Autism Speaks.

You only took the word “cure” out of your mission statement. You did not remove the hatred of our existence. You might have fooled some people, but you aren’t fooling me.

8. Advancing Research Into Better Interventions for Autism Spectrum Disorder and Related Conditions

Meet the new torment; same as the old torment. Are these the better interventions that strip away our autonomy more efficiently, leaving us even more vulnerable to predators? Or is this more support for “treatment centers” that use electric shock on us? Or are these the better interventions that prevent us from being born in the first place?

No thank you, Autism Speaks. You have to do more than draft some buzzier buzzwords for me to trust you.

In fact, I think I agree with my friends who have said that the only thing you could possibly do at this point to win our trust is completely dismantle and donate all your money to other organizations that are Autistic-led and doing the real work to make our actual lives better.

Who cares what causes autism? What good can it do Autistics to learn why we exist? We are grossly under served — all of us, “across the spectrum and throughout the lifespan” are not getting what we need to thrive and you are taking the money and volunteer time that could help bridge that gap and throwing it at research designed to eradicate us.

No. You have not changed a damned thing. I still don’t trust you. I still don’t trust those who support you.

All the carefully worded mission statements in the world will not change that.

1. https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf
2. https://www.autismspeaks.org/sites/default/files/docs/annual_report_9-11.pdf
3. https://www.autismspeaks.org/science/science-news/autism-speaks-launches-mssng-groundbreaking-genome-sequencing-program

Life, Animated: A Review

Life Animated Poster

[image description: a movie poster for Life Animated. The movie title is in red on a blue background. The top half of Owen Suskind’s head is at the bottom of the image and line drawings of figures from Disney animated movies surround him.]


Life, Animated: A Review

Last night I went with friends to the Portland Museum of Art in Portland, Maine, to see the indie documentary, Life, Animated.

Life, Animated is based on a book by Ron Suskind, a journalist and father to Owen Suskind, the Autistic young man who is the film’s subject and an absolute delight. Owen’s greatest love in life is Disney movies and these films have sustained him through many dark years of isolation and bullying (years Owen calls “glop”) as well as all the disappointments and tragedies a well-lived life can bring. And Owen’s life is well-lived, indeed. He is a charming man, a natural leader, and a deep thinker.

I write this review as an Autistic adult, myself, and I found much in this movie that made me rejoice. I confess that I was troubled by some of the language used, for example when Owen’s father talks about feeling as if someone had kidnapped his child, then later discovers Owen was “still in there” and sets himself about a “rescue mission” to “pull him out” of the “prison of autism.” I was torn at those points in the movie, between an empathy for Owen’s family, feeling themselves at a loss to communicate effectively with their child and a heavy feeling in my heart at hearing an Autistic person described that way.

But I came away from the movie realizing that Owen, himself, had similar feelings about his relationship to the world. While he never directly said, “being an Autistic child was like living in a prison,” he talks about feeling so overwhelmed by all the sounds around him that fought for his attention and made people’s voices “a garble.” And when Owen talks about his glop years, he is clearly distressed by how badly he was bullied and how lonely he felt.

Ron tells a story of connecting with Owen through a hand-puppet of Iago, the parrot from the Disney animated film Aladdin. When Ron spoke to Owen through Iago, Owen said that he was sad because he had no friends. I realized that, as much as I hate the phrase “prison of autism” and how it puts all the blame for communication barriers on the Autistic person and implies that we are the ones who must do all the work to enter someone else’s world, Owen’s experience of growing up Autistic must have felt very much like being imprisoned in glop.

I also came to terms with Ron’s use of language because he didn’t simply decide that Owen was “locked away”  and had to come join “the real world,” but, together with his wife, Cornelia, and Owen’s older brother, Walter, he entered Owen’s world. When the family realized that Owen was using Disney movies to communicate, the whole family used Owen’s love of Disney as an entry portal to join him in his world. That was what made this movie so beautiful to me: that the family encouraged Owen’s deep love for Disney and found their way into his world. Suddenly autism isn’t as much of a “prison” when the whole family has opened that door with love and performed their “rescue” by entering and joining Owen.

I recommend this movie to anyone with a compassionate heart. Owen will charm you. His life progress will cheer you. The way Owen feels his pain deeply will move you. Owen’s ability to process his pain and move through it to the happiness beyond will impress you. Owen is a man with a powerful vision of justice, loyalty, and independence.

While his father produced it, this is Owen’s film in every aspect. Owen’s parents and brother worry about what will happen to Owen when his parents have aged and passed away, but Owen will be just fine and we, the viewers, see that when Owen pauses The Lion King to ask the Disney club he formed at his school, “what was Mustafa teaching Simba?” Members of the club offer insightful responses and Owen agrees, summing up their words by saying, “when our parents can no longer help us, we have to figure out things on our own.”

Owen is figuring things out. He is moving forward into the world, “a little bit nervous and a little bit excited,” and discovering that he can succeed as an adult without losing the magic and wonder of childhood. He has memorized every Disney film and he has internalized the valuable lessons they teach about friendship, courage, and honor.

His parents still get teary-eyed when they talk about the early days when Owen was first diagnosed with autism. But only moments later, they are clearly bursting with pride at what a lovely, strong man Owen has grown to be.  Owen is, in his own words, “a proud Autistic man.” The viewer will leave the theater feeling proud of Owen, too. I found his journey through the darkness of glop and back into the light, with the help of the timeless Disney stories, inspirational for my own journey through the glop of anxiety and depression, loneliness and bullying, isolation and deprivation. Owen has saved his own life with stories and, in the process, become a storyteller in his own right.

Owen’s prison was not autism. He is still Autistic and he will always be Autistic. Owen’s prison was isolation from others. What saved Owen’s life was not being pulled out of autism, as if that were even possible. (It’s not. Autism is how his brain is wired and as deep a part of who he is as the Disney stories he loves so much.) What saved Owen was communication. When Owen’s family learned how to communicate with him, they opened a path of connection that grew stronger every day.

For me, the strongest messages Life, Animated brings to parents of Autistic children is to never give up on finding a way to communicate with your child and never give up on helping your child find a way to communicate with the world.

At one point, Owen communicated by repeating a line from The Little Mermaid over and over: “just your voice. Just your voice.” Owen’s pediatrician said it was merely echolalia, signifying nothing. Ron seemed to agree with the assessment on the surface, but beneath that agreement, he clearly harbored a secret hope that it did signify something. In my opinion, Ron was right. Echolalia is communication, as many parents of Autistic children who speak in quotes will quickly tell you. Many Autistic adults who were echolalic when younger (or still are as adults) but have developed a more independent voice will agree: when they were, or are, echolalic, communication is still happening on their part, even when it’s not getting picked up and understood by the recipient.

Ron did not so quickly dismiss the echolalia as meaningless. Moreover, at one point in the film, Ron extends the question of meaning, asking, “who decides what a meaningful life is?” Ron never directly answers that question, but he doesn’t have to. Owen has a meaningful life by anyone’s measure.

But the only measure that really matters in the end is Owen’s. Owen said he didn’t feel like a hero; he felt like a sidekick. But in re-making the Disney canon into a story that was truly his, he rose to become a hero among sidekicks and the protector of them all. Owen has crafted a meaningful life on his terms.

Life, Animated is a celebration of communication, of victory, and of an Autistic life well-lived. I hope you have a chance to see it soon yourself. The film offers much to think about and discuss as our culture struggles to understand what autism is and how Autistics can be welcomed and honored as full participants in society. We can be helped to find our own way in the world as narrators of our own life stories.

 

 

 

An Open Letter to Time Magazine and Joel Stein

Time Magazine Article

[image description: A screen shot of an online Time Magazine article with a highlighted sentence reading “Now the web is a sociopath with Asperger’s”]

update 8/18/2016: Time Magazine removed that sentence, either while I was writing or shortly after in a response to a flood of Twitter protests.

Waaaaaaaay down at the bottom of the article, the included the most bland apology possible: “Editor’s Note: An earlier version of this story included a reference to Asperger’s Syndrome in an inappropriate context. It has been removed.”

Just below that, it says, “This appears in the August 29, 2016 issue of TIME.”  If that means what I think it means — that the hate slur is also in the print edition, where it cannot so quickly be erased, Time Magazine owes the Autistic community a MUCH more sincere apology than has yet been offered.

update 8/20/2016: I just looked at the print version of this issue. As I suspected, the slur is there. You can see photos of it on my Facebook Page.  TIME Magazine and Joel Stein owe the Autistic community a HUGE apology for using our neurology as a slur.

Dear Time Magazine and Joel Stein,

I am Autistic. In your article published online this morning, you engage in the behavior you purport to bemoan. You have trolled me on the internet.

You see, I was already having a pretty horrible day today. It started with my usual morning activity: crunching the numbers and figuring out if I will be able to survive another month.  I have a really hard time keeping myself fed because I have multiple disabilities, including hypernychthemeral syndrome, which is like having my sleep-wake symphony conducted for an orchestra playing on Mars. No one wants to hire an Autistic who can’t stay awake, so I have been living 20 percent below the poverty threshold on government benefits while trying to build enough income through writing to support myself and my cat. We live in my van and we’ll make it another month, but only if I stop off at Salvation Army to pick up boxes of food.

Your article writes about a culture of hate online? Try living with half a dozen serious disabilities in the culture of hate that is everywhere around us. I’m talking about that culture that is always angry about “those people” who live off the government. I’m trying, I really am. But I started out behind the eight ball and it’s really hard to see my way out of poverty from back here.

So after that refreshing morning activity, I turned to this blog, writing an entry about how desperately disabled people need to be able to have emergency savings funds. We aren’t allowed to because if we have too much money, our benefits get taken away and we have no medical coverage, no place to live, nothing to eat. So we have to live on thin ice, hoping we never have an emergency or end up stuck with an abuser. In the case of Autistics, good luck on that last count. 83% of women with developmental disabilities have been sexually assaulted at least once in our lives. That’s dangerously close to all of us. And half have been assaulted more than ten times. More than ten times. Imagine that for a moment. Imagine the level of hatred a person would feel like their entire culture had leveled against people like them to allow such a travesty. That, Time Magazine and Joel Stein, that is a culture of hate.

You wonder why we’re losing the internet to a culture of hate? Have you lifted your head from your computer screen and looked around you lately? The internet is embedded in a culture of hate. It goes far beyond me and my petty problems, but let’s get back to my problems for now since you are part of them today.

After writing my blog entry about how hard it is for Autistic people to avoid getting abused by everyone who walks through our lives, given that so few of us have savings to fall back on when people start leveraging our fundamental human needs against us…not to mention those of us not allowed to have savings. Or marry. Did you realize that people on SSI lose a quarter of our income if we marry? And those of us living in group homes are often forbidden to have a romantic life at all. Our lives are carefully managed for us and too often our options are rebel and end up in a worse situation or quietly put up with what we have. Anyway, after writing about that, I took an academic survey about Autistic lives, social media, and quality of life.

That survey dropped me into a pretty deep funk. You see, there were a couple of questions that were a one-two punch to my gut:

“Please describe what the phrase “quality of life” means to you. Please also share what quality of life means for your own life.”

This question was almost too difficult to answer. All I could manage to do was define the phrase ‘quality of life’: “Quality of life is the assessment of how much or little a life is worth continuing versus committing suicide.”

That primed the pump and the next question was where the devastation really occurred: “How would you describe how autism affects your quality of life?”

Time Magazine, Joel Stein, I’m going to clean up my language for you now. This is the censored version of what those academic researchers got from me: “Autism does not affect my quality of life. The way the world treats people like me is what really messes with my quality of life. Then, as a nifty little reward for the PTSD I live with after putting up with a life of abuse for being different and predation for being extra vulnerable, the world tries to decide for itself whether I have quality of life or not. The world stops asking me and people like me if we think we have quality of life and decides people like me shouldn’t even exist. It dives deep into research on how to detect us early so we can be removed from our mothers’ wombs. Autism is fine. It is abusive jerks who refuse to understand what autism really is who are, to paraphrase Orwell, stamping on my quality of life like a jackboot smashing a human face forever.”

That is the culture of hate in which I live. It is a culture where the late Suzanne Wright of Autism Speaks was applauded for telling the Pope that we are innocents with no financial cares. She said we were like lepers and our parents were like Saint Francis, nobly taking care of us despite our affliction. She said that and I listened and I wept because I can’t afford to feed myself. I have friends who are starving, who live in housing without running water, who live with daily abuse. I have friends who have barely managed to leave facilities where they were repeatedly, painfully shocked on their skin any time they expressed a personal desire, such as wanting to leave their coat on instead of taking it off. I have friends who live in fear because their Autistic teens are large and Black and growing facial hair and that puts them in line to be the next Reginald Latson or Arnaldo Soto. Sadly, white Autistics don’t fare much better. Just ask the survivors of David Levi Dehmann or Kayden Clarke.

And here, into my not-so-awesome day in this not-so-awesome culture of hate we’re all steeped in, comes your article.

When you, Joel Stein, wrote these words and you, Time Magazine, published them, did you not get the irony of asking how the internet was turning into a culture of hate-filled trolls as you used my disability as a bludgeon? Did you not realize that you were crafting words of hate that are massively damaging to a population that already suffers hate and abuse? Did it not occur to you that your words would feed the depression of countless Autistics — myself among them — who grapple with depression, anxiety, PTSD, and a pervasive feeling that we live in a world that would rather see us dead than help us have quality of life?

Did you realize that there are studies out there that have found that youth with Asperger’s have a suicide rate 28 times higher than non-autistic peers? Did it occur to you that your words are exactly the sort of brickbats that contribute to that astronomically high rate? You are part of the problem you attempted to describe.

If you truly care about a culture of hate on the internet, you will retract your hate speech. You will apologize to Autistics and people with Asperger’s. You will do something active to make this world a better, safer, less hate-filled place for Autistic people, and you will never again deem it appropriate to use a vulnerable disabled population to make a pithy point. We are not your linguistic color; we are human beings.

 

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