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.
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.
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.
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.
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.”
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. It also means that I had to get van insurance from somewhere like one sure insurance just in case I get into an accident or my minivan is stolen.
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.