Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: privilege

How Autism Can Mimic Avoidant Personality Disorder

Rose

[image description: a sketch by Sparrow Rose. A rose, colored red,  with different geometric patterns on each petal and the name Gertrude Stein inscribed on the green stem. The rose is superimposed over a circle of blue letters with the Stein quote, “A rose is a rose is a rose” encircling infinitely, like the plates Stein’s lover, Alice B. Toklas, used to sell.]


I stumbled across an article on Lifehack about Avoidant Personality Disorder  this morning. I read through the article, alternating between, “yes, this is exactly me,” and “a mental disorder is only a disorder if it’s not true. You’re not paranoid if they really are out to get you.”

Finally I got to the section that said:

“What is known, however, is that symptoms first start manifesting from infancy or early childhood. The child will display shyness, isolation, or discomfort with new places or people. Often times, children who do exhibit these tendencies grow out of it, but those with the disorder will become even more shy and isolated with age.”

That clinched it for me.  I do not have Avoidant Personality Disorder if it is something that develops in childhood.  This is not to say that someone else would not have both autism and Avoidant Personality Disorder at the same time. I am not a medical or psychological professional so I can only talk about my own experiences and perceptions here, in hopes that it will help others feel less alone or maybe give someone new things to think about and new avenues to explore.  Even if I’m simply venting my own frustrations to the void, that’s helpful for me. So I’ll continue.

I effectively have a mimickry of Avoidant Personality Disorder, caused by 50 years of being bullied by others. I have carefully studied the bullying and done whatever I could to make it stop. I have changed the way I dress, the way I wear my hair, my grooming habits.  I have tried Dale Carnegie’s methods outlined in his book How to Win Friends and Influence People, I have tried sticking with social groups that center around my interests, I have tried surrounding myself with only fellow Autistics, I have tried blending into the background, and I have tried saying nothing at all ever.

The bullying will never stop. After half a century of it, I have come to realize this.  It doesn’t stop when you grow up, or when you go to college, or when you find a job, or when you find work that you are good at, or even when you find a community of people who are similarly brained and have all grown up with the same crushing bullying themselves.  It never stops and the only place where there is no bullying is alone.

I’m not saying this to get your pity.  As graffiti in an ADAPT video says, “piss on pity.”  I am saying it because it is a solid fact that needs to be acknowledged.  No amount of zero tolerance policies can police the bullying away.  No amount of social skills training can teach the victim how to stop being whatever part of who they are that attracts the bullies.  The only way to stop the bullying is to stop letting bullies have access.

Temple Grandin does it with money — she has enough money to pay people to form a human shield around her so that she can live in a bubble where bullies are not permitted entrance.  I don’t have that kind of money and am not likely to ever have even a fraction of that kind of money .  The only way I can build a bully-free bubble in my life is to emulate Avoidant Personality Disorder.  It wasn’t a conscious choice on my part … inch by inch, the bullies drove me back into myself.  Like a slinking night creature, I have crept further and further from the glowing campfires of humanity and into the safe and soothing darkness of solitude.

Those who counseled me to “just put yourself out there”  are complicit with the bullies.  Those advisors have encouraged me to boldly stride behind enemy lines, unarmed. Sometimes they even blamed me for the shelling I received as a result.

When I tell people about the bullying, I get a few different reactions.  One popular answer is to tell me I’m bringing it all on myself.  If I just weren’t so … If I didn’t insist on always …  If I’d just stop … And why can’t I blend in better?

Another answer I get is that I’m blowing it all out of proportion.  Everybody gets teased.  It’s part of how people make friends with each other and I just need to lighten up a little and learn to laugh at myself.

Some well-meaning people tell me that they can’t see how anyone would want to bully me because I’m such a kind and gentle, loving person.  The thing is, whether I’m kind or whether I’m a jerk, the bullying is real and denying it could be possible is calling me a liar when I tell you that it does happen.

Let me talk a little bit about the traits of Avoidant Personality Disorder from the article — the traits that caused me to briefly question whether I might have Avoidant Personality Disorder or not. (I don’t.  Through most of my childhood, I virtually flung myself at others.  I am an extrovert and I spent my 20s seeking out human company all the time, alternating between hope and despair.  It has only been in middle age that I have begun giving up and avoiding people.  The accumulated years of bullying have finally weighted me down sufficiently to provoke an avoidant, hiding response to life.)

Reluctance to be involved with people unless certain they will be liked.

This has been me for a long time.  Lately I’ve been feeling pessimistic enough about people liking me that I’m reluctant to be involved with anyone.  This is not just the depression talking (although that’s a contributing factor, for sure.)  I have gotten enough screen shots handed to me of people who smile to my face and then talk hate about me behind my back that I’ve learned not to trust anyone.

But even before I reached this critical mass, I have had a tendency for years to assume the worst.  If someone is not clearly welcoming toward me, I assume they are just tolerating me and I try to go away before they reach the end of their tolerance.  This is learned behavior on my part.  After experiencing the same thing again and again, my pattern recognition finally kicked in.  It is other people’s behavior that has taught me that someone who does not make it clear that they enjoy my presence might eventually “snap” and start abusing me because I didn’t get all their hints. Hints that I can’t see.

I can see people welcoming me and I can see people abusing me, but I can’t see all those little nudges and hints and insinuations and sarcasms, and social corrections. So when people aren’t clearly welcoming, it’s an act of self-preservation to go away before the abuse starts.

Takeaway lesson: if you appreciate an Autistic person, make sure to let them know.  Take the emotional risk.  Tell them that they’re wanted and liked or loved.  You might embarrass them, sure.  But you will also be engaging in clear communication that lets them know they are wanted and should stick around.

Avoidance of activities (whether professional or personal) that would require significant contact with others due to fear of rejection or criticism.

I just quit a job last week.  I won’t pretend it was the greatest job ever.  It was a job that claimed to pay $8.10 an hour and, technically, did.  But it had such a draconian break policy that the realistic pay for the time I was required to be at their place of business in order to get my work done was more like $4.05 to $5.40 per hour.

But even with that, I needed that job.  Four bucks an hour ain’t much, but money is money and I’m a little bit addicted to eating. So is my cat.

But the bullying was so crushing, I had to leave before the bullies stripped me of the shreds of self-preservation I had left.

The ringleader set me up so perfectly.  He started out being very interested in what I had to say.  He encouraged me to talk more.  He found opportunities to get me alone to encourage me to open up even further, one-on-one.  He showed interest in my writing and even started reading my book. He had gotten five chapters into it by the time I left.

I came to be deeply emotionally invested in him and his circle of friends. And then one day, when the hooks were good and set in me, he turned on me.  He shouted at me. He called me names.  And his friends began to perform live theater in front of me — imitating me, my movements, my way of talking, my favorite subjects.  But all of it embarrassingly exaggerated, grotesque, and insulting.

I couldn’t even walk through the hall at work without getting waylaid and berated.  I started hiding in my car, missing hours.  I was falling behind in my hours and the boss said I had to make them up. I would have had to live at work all day long to make up those hours but the C-PTSD from all the years of bullying in school had kicked in at full force and my bullies started making a point of surrounding me. We could sit wherever we wanted in the workroom and I would quickly become surrounded by my bullies who would stare at me while they talked to each other and laughed.

I know it doesn’t sound like much.  But try it some time.  Life gets pretty grim when the only people you are ever in contact with are so clearly targeting you. I was becoming suicidal.  I couldn’t possibly make up those lost hours. In a last ditch effort to save my life, I quit.

Significant contact with others is not viable for me.  I have to meter my contact with people.  It doesn’t take long before they realize I’m only there to be their punching bag.  Places I can’t retreat, places I can’t hide — these are dangerous places full of bullies I can’t escape.

Takeaway lesson: If you know an Autistic who doesn’t want to go someplace, take them seriously.  Investigate.  Empathize.  Don’t just decide they’re being lazy or willful.  There’s a good chance they’re being damaged by that place and what happens there. Don’t jump to automatically contribute to the damage by forcing them to be there.  Find out what’s wrong.

Unwillingness to try new things due to shyness or feelings of inadequacy, particularly in social situations.

My feelings of inadequacy in social situations are very real.  I am not suffering Avoidant Personality Disorder – I am suffering humanity. People are cruelly unforgiving of those who cannot figure out the social rules and conform to them.  People are exploitative of those who struggle to conform to the social rules and thus are easy dupes for con artists.

Yes, I am unwilling to try new things, so long as there are people involved with those things.

I saw a pair of roller skates I really like and would get if I had income, but I don’t want to skate with other people.  I would love to spend more time hiking on trails but only if I can go alone. I love camping but I don’t want to camp with others.  I’m interested in trying new kinds of writing, new art techniques.  I’d like to play new musical instruments. I love learning languages but am limited in how far I can go because I don’t actually want to have a conversation in any language.

I am always open to the new experience …. but only if I can do it alone, without observers, without companions, without bullies.

Takeaway lesson:  if you know someone Autistic who doesn’t want to try something new, don’t assume it’s “just the autism.”  There could be other reasons.  You might be the reason. If you didn’t react well the last times they tried new things, they might not want to try more new things …. when you are around.

Sensitivity to criticism, rejection, or disapproval.

Tell me what “sensitivity”  means?  Am I sensitive when I have been wounded again and again until I spend all my energy trying to spot the landmines and skirt around them?  Is a soldier sensitive to Claymore mines? Is it right to call me sensitive after five decades of walking a never-ending social minefield?

Difficulty with building intimate relationships because of fears and insecurities.

I don’t trust anyone.  How could I possibly build a close friendship or relationship when those connections are based on mutual trust and I have long since run out of trust?

I watched 13 Reasons Why and I could understand why Hannah became so guarded.   After enough abuse had been heaped on her, she could never have dated Clay because she had lost the ability to trust that anyone could possibly like her and want to be with her just because she was a great person.  Everyone abused and exploited her and then sneered at her as a “drama queen”  when it was their treatment that had caused her to become so distressed in the first place.

This is what we do to victims of bullies.  We look at the depressed, broken shells they have become and we blame them for it, telling them that their brokenness is why they are bullied.

It’s like telling someone that they just need to stop bleeding and the sharks will ignore them.  But it was the sharks that bit them in the first place and they will never stop their feeding frenzy until they have devoured all the blood.  Bullies devour their victims and they aren’t even courteous enough to swallow them whole.  They tear pieces off them.  And more pieces.  And then they get excited when they see the emotional blood leaking from the wounds and bite larger and larger chunks, hypnotized by their own power to destroy another human being.

Is anyone surprised at difficulty with building intimate relationships after one’s being has been shredded by the shark teeth of constant bullying?  What about the fears and insecurities that are real? How much does cognitive behavioral therapy repair a person who is afraid of and insecure about something that has been happening every time they are around people ever?  How much therapy does it take to erase fifty years of bullying?

Feelings of being socially inept, inferior, or unappealing to others. As a result, there are tendencies to have extremely low self-esteem.

I wonder about this.  Self-esteem, that is.

All my life, I have been told that I have low self-esteem.  I can see why people would say that.  I don’t “put myself out there.”  I look at the ground when I walk (Partly because I don’t want to accidentally make eye contact with anyone but just as much because I need to see the ground.  I have bad balance and low proprioception.  If I can’t see the ground when I walk, I fall and hurt myself.)

Does it sound like low self-esteem when I say I am pathetic at making and keeping friends?  Is it still low self-esteem when it’s the truth?

Does it sound like low self-esteem when I say that there just aren’t enough accommodations to make it possible for me to keep a job (I was kind of doing okay at the last really crappy and underpaid job until everyone decided to team up to make my life hell for their amusement) and that I struggle with poverty as a result?  Is it low self-esteem when the truth is that my multiple disabilities get in the way and I really can’t support myself financially?

I don’t actually think I have low self-esteem.  I am not happy with my body (who is?) but I know there is hope that I will be able to afford medical transition some day and I can finally feel at peace in my skin.  But I also know I am more than just my body and I love the way I solve problems and puzzles.  I love my musical talents.  I’m still learning to draw, but I’m very proud of how quickly I’ve learned and how fast I ‘m progressing.  I am proud of my writing skill and pleased to see that skill improving all the time.  I am a compassionate, empathetic, kind-hearted person.  When I am not depressed by poverty and bullying, I know that I matter.  I help people all the time.  My heart is filled with love.  I feel at home in nature.  I am a good person.

If I really am socially inept and unappealing to others (except as an amusing punching bag), is it fair to call my reaction of despair “low self-esteem”?  It sounds like the problem is being centered in me rather than in the people who go out of their way to make my life as miserable as they can get away with.

Takeaway lesson:  telling someone about their “low self-esteem” that only cropped up as a result of being mistreated by others is just another way to blame the victim for suffering someone else caused.

Yes, I am avoidant.

No, it is not a personality disorder.

It is a matter of survival.

The recent bullying is so fresh that it took me four hours of sitting in my car in the McDonald’s parking lot yesterday to finally overcome my physical exhaustion and go inside to get some electricity for my battery and get a little work done.

Avoiding is the tip of the iceberg.  Being avoidant is debilitating and not always for the reasons you might assume.  I am so tired all the time.  I am worn out from carrying the burden of bullying all the time.  I am exhausted.  There is so much I want to do — I have long lists of things I’m excited to write, draw, record.  But I’m running out of steam.  Survival is too hard.  It’s ground me down.  I’m wearing out.

The price of permitting bullying to continue is unreasonable — at least for me.  Maybe it’s because the rest of the world doesn’t have to pay my price — and because they have no idea what I would put into the world if I just had a little more energy — that they don’t care much about stopping bullies.

You can do your part, though.  Stand up against bullying.  If you can do it without making too much of a target of yourself, speak up when you see bullying.  You might have to watch for it, though.  Bullying is all around you and you don’t see it.

In high school I was so bullied that classmates put sexual statements about me in the school newspaper.  “That couldn’t be true,”  my mother said. “It was a good school.  They wouldn’t have let that happen.”

But they did it in code.  That’s how they got away with it.  People are being bullied all around you and you don’t even see it!

They started by telling me they knew I was selling sex. (Good grief! I was 13 years old!) and that they heard I did it under a bridge on Dixie Highway.  (What bridge? There is no bridge on Dixie Highway.  They picked that road because it was on the south side of town where I lived and they had already spent months tormenting me about living on the poor side of town and wearing crappy clothes.  Making this alleged sex selling take place under a bridge on Dixie Highway was just a way to fold their poverty shaming in with their sex shaming.)

So when the school newspaper had a gossip column and the gossip column said, “and which seventh grader was spotted under the Dixie Highway bridge last Friday night?” it was crystal clear to me and my bullies what had just happened — I couldn’t even read the damned school newspaper without being jabbed by my bullies.  But it was completely invisible to faculty and parents.

Bullying goes on right under your nose all the time.  It’s impossible to stop it.

But I hope you’ll try anyway.

It’s too late for me.  But there are children being shredded by the shark teeth right now.  Don’t let them grow up to be people who can’t even go to work because the shark bites never healed and run so deep that they bleed all the time, continuing to attract more sharks all the time.

Don’t feed the sharks.  Take their food away from them.  And don’t blame the victims of shark attacks by telling them they smell like sharkbait.

The Lifehack article says:

“The cause of Avoidant Personality Disorder is still undiscovered, but scientists believe that it may stem from genetics or as a result of childhood environments, such as experiencing emotional neglect from parents or peers.”

So maybe I do have Avoidant Personality Disorder after all.  Maybe I’m just incredibly resilient and it took decades of bullying and emotional neglect to create Avoidant Personality Disorder in me whereas most people develop it after only a few years of the same.

It should be a crime.  And the whole damned world is guilty.

So why is it me that has to live in the prison they created with their mockery and hatred? Why am I the one being punished for everyone else’s lack of …. well, I was going to say lack of humanity, but since they all behave this way I guess bullying is definitionally an act of humanity.  It seems to be me who is not part of the fold.

I don’t have any answers to that.

But from my prison I will continue to send out love letters and lifelines of hope and poetic writing for others to catch hold of like a rope tossed from an extreme place.  Sure, the bullies will catch hold of that rope and jerk on it.  They always do.  They won’t ever stop.  But my words will sail over their heads at the same time, floating out to the world where they will offer those with the shark tooth shaped scars on their spirit the healing balm of knowing someone else sees, someone else knows, someone else understands.  I know what the sharks can do and I offer you the only thing I have: my words.

And this is what I say to you who are circled by sharks: escape. Find a break in the wall of sharks and swim through as quickly as you can.  Don’t look back.  Stay one stroke ahead of the sharks and there is good life to be found in the water. Don’t sink.  Don’t drown.  Keep swimming.

Do not let the sharks decide what you are worth and what you get to do.

Okay, I know that, to some degree, they do and will.  The sharks own this world.

But there are stretches of clear blue water on smooth seas filled with playful dolphins and swaying anemones.  Find them.  Strike out and find your safe waters and own them.

And I’ll keep swimming too.

 

 

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.

-=-

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.”

-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.

 

I Don’t Have Privilege, Do I?

lens flare

[image description: lens flare from the sun. In the upper right corner, the sun blazes brightly, sending penetrating rays down into the forest and culminating in a green arc at the lower left. Perhaps it could be taken as a visual symbol of the penetrating light of wisdom? Taken November 19, 2016, in the Devil’s Millhopper Sinkhole, Gainesville, Florida. Copyright Sparrow R. Jones]


Privilege. I’ve seen so many arguments crop up when people start talking about privilege. I understand where people are coming from: if you’re white and impoverished, you probably don’t feel very privileged, right? You probably think something like, “oh, right. This white skin sure hasn’t done much for me. I’m living in a run-down trailer while Kanye West has millions of dollars. Don’t tell me about privilege!”

I’ve seen that argument, or some variation on it, so many times over the years. The argument is incorrect because it comes from not understanding what is meant when someone talks about “white privilege” or just “privilege.”

For starters, the word “privilege” means an advantage and most people don’t feel like they have much advantage in life. “Membership has its privileges” “he’s a privileged character.” People think of the word “privilege” as something that means you were ‘born with a silver spoon in your mouth.’

Yes, that is one definition of privilege, but when the word is being used to talk about social issues, it just means a specific edge, often (but not always) brought about through society’s stigmatized view of different types of people. If you don’t belong to one of the groups of people who are especially looked down on, hated, and/or feared you have privilege…at least in that area of your life.

It doesn’t have to be a huge edge. Privilege is not an absolute and it is not like an on/off switch where you’re either a millionaire or a skid-row bum.

But there’s something even more important than the amount of any specific type of privilege you have: the interaction between different amounts of privilege or lack of privilege in your life. Let me talk about something that might (or might not) be a new word for you: intersectionality.

Yes, it’s one of those academic words. But I’m going to break it down now and hopefully it will help you understand how you can be down on your luck or even at the bottom-of-the-barrel and still have some kinds of privilege.

Every single one of us is the result of intersections (combinations/interactions) of many different personal identities.  For example, here are some of my identities:

  1. white
  2. female at birth
  3. transgender/transmasculine
  4. alternate sexuality (very complicated to explain. Let’s just call it grey asexual for now.)
  5. Autistic
  6. multiply physically disabled
  7. not mobility impaired/not a wheelchair user
  8. multiply neurodivergent/neurologically disabled (N24 in addition to autism)
  9. psychologically disabled (C-PTSD, Anxiety, Depression)
  10. middle-class upbringing (college-educated parents, good childhood nutrition, etc.)
  11. highly educated (both self-educated and at university)
  12. poor/homeless
  13. middle-aged

Each of those identities has a different amount of privilege or lack of privilege.

Let me draw you a picture of my own intersectionality. I have way too many identities to put them all in one diagram, so I’m just going to talk about four of them in this diagram:

privilege diagram

[image description: a drawing of four circles that overlap. On the edges, each of those four circles is labeled: ‘WHITE’, ‘AUTISTIC’, ‘HOMELESS’, ‘EDUCATED’. In the center, where all four identity circles overlap, is the word ‘SPARROW’.]

This diagram illustrates four of those identities I listed above: white, Autistic, homeless, and educated. I put my name in the center where all the circles overlap, to show that I am a combination of those identities. If you take one of them away, I’m no longer the Sparrow you see before you today.

When you look at my privilege this way, you can see that my white privilege is not the whole story. Way out there on the edge where I am nothing but a white person, there is a lot of privilege. The place where the race circle overlaps with the circle indicating that I’m highly educated is a space with a huge amount of privilege.

My education represents multiple layers of privilege, starting with my birth into a middle-class family with two parents who had been to college. I grew up learning things from my parents because they are also highly educated. Growing up in that family also meant I got good nutrition in childhood to help my body grow strong. I got to travel on vacations and have broadening experiences in places other than the neighborhood and community where I grew up. I lived in safe neighborhoods with good schools. I was able to go to university and earn degrees because of many intersecting (there’s that word again) privileges that go all the way back to my childhood. The good nutrition and intellectual stimulation as a child helped my brain to grow in ways that made it easier for me to educate myself. There’s a massive amount of privilege contained in the intersection of those two identities: white and educated.

But what about those other two circles? I am poor and homeless and that often makes me life very difficult. This week I have been going around to places like the Salvation Army, trying to find enough food to keep myself alive until I can either get paid for some of my writing or my next disability check comes in — and I am currently very worried about my disability income because I’m up for re-certification and I filled out the paperwork today and it doesn’t look good. If I lose my SSI disability, I have no idea how I will be able to hold my life together at all. That’s not privilege, right? My homelessness and poverty are the opposite of privilege. A lot of my humanity doesn’t matter to a lot of people in this world if I can’t pay bills or afford the basics of life.

And I am Autistic, as you likely know since this is a blog where I focus on Autistic issues and talk about my lived experience of autism. There is a lot of stigma connected to being known to be Autistic. A lot of people refuse to listen to anything I have to say. A lot of people value what non-autistic people say about autism much more highly than what those of us who live Autistic have to say about it, even when we’re saying the same thing. Most especially when our lived experience is not what the non-autistic experts say it is.

When you look at the space where Autistic and homeless overlap, you realize there is a huge lack of privilege there. Often I need things because I’m homeless that I can’t get because I’m Autistic. Or I need things because I’m Autistic that I can’t get because I’m homeless. My medical care is deeply substandard because of this intersection of lack of privilege. I have a lot of struggles with trying to build a career (ironically, since I chose to become homeless because it was the only way someone at my extremely low income-level could do the work I now do.)

But here’s the thing about intersectionality: that intersection of poverty and homelessness and being Autistic does not erase that intersection of being white and highly educated. I am still privileged at the same time that I am not privileged. I know, right? It can get confusing. But the thing about intersectionality is that I am not just one or two of those intersections of identity but I am all the intersections. When I am struggling to get my healthcare needs met because I am Autistic and homeless, I have an advantage over many other homeless Autistics because I am also white and highly educated. So there are doors that I can open with my privilege even though I am also a marginalized person.

Last summer, I was camping at a free equestrian camp in northern Missouri. There are a ton of those free camps scattered all across the northern part of the state…so many, in fact, that I counted and saw that a person could live for a full year for free, moving from horse camp to horse camp and staying a week at each one, without ever staying at the same camp twice. They are fairly primitive camping spots because they’re mostly there so that people with horses have someplace to go ride them.

My campsite on that particular evening had a fire ring and a picnic table, plus the site had a dumpster and a vault toilet (a big outhouse, basically.) There was no running water, no electricity…and no people. I had a great time there because I was alone for most of that week. Someone parked near me for a few hours to take their horse out of a trailer and ride him around and then left. I really enjoyed the solitude.

One night, a police officer pulled up to my campsite. He asked me if I had heard gunshots. I answered honestly that I had not, and that I had been in my van for the last hour, so I wouldn’t have heard them anyway. I have no idea if there were really gunshots or if that was just his way of opening a conversation with me. He asked me what I was doing and he was pretty friendly about it. I told him the truth: I was on my way to spend the Fourth of July holiday with family but, “you know how it is: I don’t want to show up so early that they’re tired of me before the holiday even starts! So I figured I’d spend a little time camping. Really nice campsite you’ve got here!”

He laughed with me about the idea of imposing one’s self on family too long and agreed that Missouri sure was pretty. Satisfied that I hadn’t decided to permanently move in and that I seemed to be just an innocent traveler, and not up to no good, he wished me a good evening and left.

After the officer left, I wondered how that encounter would have gone if I were Black. Would he have been so quick with the friendly banter? Would he have been so quick to decide it was okay for me to camp there? What if I were  not from a highly educated middle-class family? The words that come out of my mouth tell people that I come from a particular background and many people respect me when I am speaking well. What if my stress levels and anxiety  had been so high that my Autistic tendency to lose speech in difficult times had kicked in and I wasn’t able to speak smoothly with him? What if I had been in one of my moments where I can’t speak at all and had to type my half of the conversation to him on my AAC device?

This is intersectionality of privilege: the way I was treated by that police officer showed me that he was seeing my privilege and feeling comfortable about me because of it. I could easily have been in a situation where he mainly saw my lack of privilege and felt concerned about my presence at the campsite, wanting to chase me out of his county or put me in his jail or take me to a mental hospital. And if I had been a different person — perhaps one who had a harder time hiding my lack of privilege…say because it was predicated on my dark skin color that I could not hide from him no matter what … it is anyone’s guess how that interaction would have gone.

This is why we talk so much about white privilege when we discuss privilege, even though there are so many different kinds of privilege. Being Black is something a person can’t turn on and off, can’t disguise, can’t just keep their mouth shut about, can’t see a voice coach to learn how to obscure it. Black is Black, no matter what. And that’s a great thing, and something to be pleased and proud of…but it’s also a facet of a person’s identity that means they have to be careful with every single life choice.

Being Black is a facet of a person’s identity that means they live with a target on their back every day, every moment. The wrong word, the wrong movement, going to the wrong place, wearing the wrong clothes, walking home the wrong way on a dark rainy night with your hood up to keep the rain off your head … every single thing that Black people do or say can put them at risk because Blackness is the first thing that people see about them and people make judgments and decisions based on that.

And that is why white privilege is such a huge thing, even for someone like me who is poor, hungry, homeless, multiply disabled, struggling to get by with anxiety and PTSD and a history of abuse and institutionalization. The cards are stacked against me…but my skin is white and my words, when they are working for me, instantly reveal my level of education and privilege and that has kept me alive against the odds for fifty years.

The next time you see someone talking about privilege and you feel angry or ashamed and want to reject the idea that you have privilege? Don’t. Accept that you have privilege. Admit it. Own it. Privilege is not something to be ashamed of. Most of us didn’t even ask for the privileges we have; we were just born that way or born into an environment that was aimed toward shaping us that way. “Check your privilege” doesn’t mean to be ashamed of what you have or of the advantages it gives you.

Being asked to check your privilege just means that you should stop to think about the things that seem easy for you and remember that they are not easy for everyone. You may make phone calls with barely any effort, but it can be hell for me and impossible for someone else. I can drive really well: I’ve driven 31,000 miles in the last 18 months and have only put a few light scuffs on the car in the process (that one-lane tunnel in Indiana was way too narrow, I swear to you!) Not everyone can drive so well or even at all. I’d go so far as to say that at least half of my friends cannot drive at all. Maybe even more than half of them. I am not ashamed that I can drive, but it is important that I check my privilege and remember that it’s not something everyone can do (and there’s no shame in not being able to drive, either!)

If you feel like people want you to feel guilty for being white, stop and ask yourself if you are projecting your own feelings onto them. I have been told to check my white privilege a lot of times and I have never felt like someone wanted me to be ashamed of being white (or of having any sort of privilege). Being ashamed of being white (or privileged in any other way) accomplishes nothing! If you are having a hard time getting past that feeling, though, it can be very therapeutic to use your privilege to help break down the barriers that other people face. Here are some suggestions of ways to use your privilege for the benefit of marginalized people:

Seven ways to use your cisgender privilege (the privilege of being born the sex/gender you identify as being) to help transgender people.

Four ways to “push back” against your privilege (of any type) and help marginalized people.

What to do instead of just feeling guilty about it once you realize you have privilege in some area of your life.

Five ways to use your privilege to fight anti-Black racism.

And, just for good measure, a white cis man explains why wearing a safety pin is not enough.

So don’t resent it when someone lets you know about your privilege. They are helping you to understand yourself better. You are not supposed to feel ashamed. Someone said, “people tell me to check my privilege to get me to shut up” and that’s kind of true. Because as some of those links I just gave you will remind you, when someone reminds you of your privilege that’s the time to stop talking, start listening, and learn about the realities of someone else’s life.

I have learned so much when I have listened to my Black friends, my Latinx friends, friends who are trans women, friends with psychiatric disabilities I don’t have, friends with other disabilities I don’t live with, immigrant friends, friends much older or much younger than me. I have learned so much when I let people tell me about the marginalized aspects of their lives.

When someone helps me check my privilege, they are doing me a favor. It might sting in the short term, but I benefit so much in the long run. We all benefit from understanding the realities of the lives of people who are not the same as us. And we all benefit from increasing access for everyone and working to build a world that is more understanding, more fair, has more opportunities and less stigma and bigotry.

Do you have privilege? Probably, yes. Most people have some amount of privilege and some amount of lack of privilege. It’s not a contest and it’s not a zero sum game. Don’t get caught up in trying to calculate how much privilege you do or don’t have. Accept that you have some privilege and do what you can to help marginalized people (including yourself, if you are marginalized in aspects of your life) get heard and respected.

We are stronger together, all of us. Check your privilege and then use that privilege as a force for good in the world.

© 2017 Unstrange Mind

Theme by Anders NorenUp ↑