Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Author: unstrangemind (page 1 of 5)

Friendship, Support, and My Inner Circle

crosswalk

[image description: a transmasculine person smiles in front of the rainbow crosswalk painted for Pride Week in Houston’s Montrose neighborhood. Image © 2017, Max Sparrow]

I’m going through an intense and exciting time in my life.

Like most (all?) humans, I am greatly enriched by any and all support during this intense time of great change. And I am blessed to have so much support and so much love from others.

I want to talk about layers and intensities of friendship and love from my Autistic perspective. This is just me — other Autists might be different, so don’t assume that I’m telling you some kind of universal Autistic thing.  Take my experience as a first step in asking questions and working to understand yourself or the Autists in your life.

The phrase “inner circle” has a lot of meaning to me because I have a small but very important inner circle. My inner circle consists of one or two people with whom I am engaging in a deeply intimate and trusting manner. I seem mainly to only be able to hold one person in my inner circle at a time, although for the last couple of months I was holding two people in there. It was very difficult and I found myself feeling like I was oscillating between the two people in my inner circle.

I credit (whether accurately or not) my Autistic neurology for my very small inner circle. I have tried to expand my inner circle and I just can’t. This is the place where a best friend and/or a lover fits into my life. While I admire polyamory, I have not been able to engage in polyamory myself because trying to fit more than one person into my inner circle causes struggle. Trying to fit more than two people into my inner circle causes tragic implosion. It might be possible, but it turns out to be highly ill-advised for me. Growing up, I wasn’t even able to hold both my mother and my father in my inner circle at the same time.

Because my most inner circle of friendship is this tiny demitasse cup, most of my life my best friend, mentor, and closest confidant has also been my lover.  This is dangerous. The saying is “don’t put all your eggs in one basket.” Problems arise when everything is poured into one person. There is so much opportunity for abuse (in either direction). It is more likely that too many of my needs will get heaped on the one person who will get burned out as a result. If that one person withdraws their presence from my inner circle, the vacuum they leave behind can be devastating.

There is another difficulty that comes from having a demitasse inner circle.  I have noticed a pattern. There is a type of person who understands how to climb right into my demitasse — even, sometimes, to the point of displacing someone else who actually belongs in there — almost immediately.  Once in there, they enjoy all kinds of fun and games at my expense (and usually to my great confusion and consternation as well) and then either they lose interest and drop me cold (leaving me to suffer that vacuum of the sudden absence of a person who I had allowed in to the most inner chamber of my being) or I begin to awaken to the toxic nature of what I have been allowing to happen and I evict them myself.

(I’ve also had people inexpertly try to break down the door to my inner circle but get held at arm’s length due to their clumsy attempts to manipulate me being so obvious.  This sort gets angry and bludgeons me in some way for refusing to allow them entry. The last person who did this to me ended up sending the police to my door because I didn’t answer their text for 45 minutes.)

I try to be an open person. There is risk there. People slip in to greater intimacy than I should be allowing them.  Some of them use or hurt me. I am learning how to guard against that. There is also great risk in being a closed person.  If I let no one in, I impoverish myself.  Human contact is important to me.  One big reason I adopted a nomadic lifestyle was so that I could expand my world by meeting more people.

I have other levels of friendship. The next level is is pretty big and I have a lot of people in there. Some of them I don’t talk to for weeks or months at a time but when we connect again we pick up the conversation as if only a moment had passed since the last things we said to one another. These are people I love deeply and am deeply grateful for. Then there is a huge swath of acquaintanceship with a great many people with whom I have limited interactions.  They are people I admire and respect but we have a connection that I consider to be more “surface” (athough, compared to how I see friendship discussed by others, I suspect my “surface” is still pretty “deep” for most people.  I credit Autistic neurology for this, too. We don’t tend to do chit-chat.)

But that innermost level….I have not made the best choices about who I allow in there.  I have accidentally ended up with someone marvelous in there, and been very grateful.  And I have accidentally ended up with someone destructive in there.  Sadly, the latter has happened more often than the former.

I have been doing a lot of thinking lately about my inner circle and how vulnerable this model of relating can make me. Times when I’ve had no one in my inner circle have been bleak and desolate. But I’ve been wondering whether that is necessary. It certainly isn’t desirable.

And what I’ve been thinking about most is this:

Can I be in my own inner circle?

And I think that question is key to a personal breakthrough.

 

 

 

A Close Call with a Whole Gale Storm

metal tables

[image description: two heavy metal folding tables held together by chains to prevent theft. The tables are heaped in a darkened parking lot, where the wind casually tossed them after they nearly crushed Sparrow. Photo copyright Sparrow Rose, 2017.)

Natchitoches is the oldest settlement in Louisiana and it’s a lovely little town with colorful stucco buildings sporting second-story verandas with ornate wrought-iron railings, brick streets, and towering magnolias and live oaks.  The house from Steel Magnolias is here, as is an alligator feeding show I was eager to check out. It looked like a perfect place to pause for the Memorial Day weekend, to catch up on work before heading toward Houston. Little did I suspect I would find myself in a life-and-death battle here Sunday night.

There was nothing remarkable about the day.  The weather seemed fine, if extremely humid.  Sunset was due in about 20 minutes. I was reading a novel about the mother of an Autistic boy (I’ll be reviewing that soon on Thinking Person’s Guide to Autism) when my weather app, Dark Sky, flashed an alert on my screen, letting me know that heavy rain was coming in ten minutes.

I had a couple of quick chores I needed to do that were unpleasant in the rain, so I quickly did them: I filled my water jugs and emptied my trash, including cleaning the cat box, thinking how nice it would be when the rain came and cooled everything off a little.  I was parked on the east side of the Walmart and when I took the trash to a trash can, I could see past the store to the western sky which was dark grey with a huge wall cloud filling the sky.

I returned to the minivan and the bulk of the Walmart hid the western sky from my sight once more.  The rain started almost right away.  I congratulated myself for getting everything done in time to stay dry. My self-congratulatory mood didn’t last long.

The rain came down so hard that the parking lot was filled with inches of standing water.  Heavy winds began bringing wave after wave of water rushing toward me.  The van began to rock with the impact of the wind.  I decided to check my weather app to get a better idea of the storm’s intensity and expected duration.  What I saw chilled me. Tornado Warning – funnel sighted, take cover immediately. If you are in a vehicle, leave and seek shelter right away.

I quickly typed “Shit. Tornado warning.” on Facebook, thinking if the worst occurred, at least my friends would know why I had disappeared. Because I travel and spend so much time away from anyone I know, I regularly take measures to enable those who love me to help find me if something should go terribly awry.

I had to act fast. I quickly debated whether to bring my cat or not and decided to leave him.  His smaller mass would protect him a little if the van went tumbling and taking him out into that solid wall of rain would not go well. He would have immediately clawed his way free and probably gone under the van. I wished him luck as I grabbed my phone, keys, and the festival pack I keep my money and identification in. I didn’t wait long enough to cram my keys and phone in the pack — I just opened the door and slipped out, locking it behind me.

The rain was pounding and thick.  The wind was coming from the west, so I didn’t feel the full force right away because the building blocked some of it. But as I ran toward the Walmart, the wind lifted the two tables in the employee break shelter beside the building.  Even with the building blocking the wind, it was powerful enough to pick up those two tables and send them hurtling straight toward me. I watched it speed toward me, a wall of certain death aimed right at my torso and head. I tried to move aside but the wind was so fierce it was like a solid object, unyielding.

At the last possible moment, a side gust of wind knocked me off my feet and turned the table into a curve ball, sending it veering off to the south. I scrambled, half-crawling, toward the building. The wind was too forceful to get past the edge of the building to the door. All the parking lot lights flickered and went out. I took advantage of a niche in the architecture where two walls came together and pressed myself into that corner, watching tree branches and other large, unidentifiable objects go flying past the building.

I had lost a shoe when I fell. Worse, I had dropped my keys. I scanned the ground in front of me as best I could through the storm but all I could see was wind-tossed debris. I knew I couldn’t go back out into the full force of the storm to look for my keys. All I could do was hope they couldn’t get blown into the next Parish before the storm ended. My immediate survival seemed more important than my keys, even though I had no idea how I would get back into my minivan — my home — without my keys.

I have no idea how long I stood there, squeezed into that niche.  I took off my glasses, made useless by the rain, and tucked them in the pack. I typed some words of update on Facebook, then tucked my phone in there, too.  With everything secured, I made another attempt for the front of the building and succeeded this time. With the power out, the sliding doors wouldn’t open! I was now out in the full force of the storm and stuck outside! I continued past the second door to take cover in the corner between the glass doors and the brick wall, a smaller niche but still some shield against the projectiles flying through the air.

A powerline directly over my head whipped back and forth ominously and I hoped it wouldn’t break loose and come down on me with a shower of sparks. It held. Debris continued to fly past me, mere inches from my face now.

Having nothing else to do but wait, I typed more updates on Facebook so people would know I was still alive. The people inside the Walmart forced the sliding doors open behind me and the wind pushed me inside the building.

Once inside, my nerves finally caught up with me. Everything had been too immediate to feel fear, anxiety, or panic while outside. Now my body trembled. The people inside seemed not to understand what it had been like, being stuck outside the building. I was counseled to never worry because Jesus is always watching out for me.  “Well, eventually he will call me home,” I responded. “I’d prefer that weren’t today.”

While we waited for the storm to pass, everyone’s phone suddenly sounded an alert. I looked at mine and it warned of flash flooding. Knowing we were right on the river, I asked if the Walmart were on high ground and  was reassured by many that the river would take days to rise high enough to reach us.

Finally the wind died down. I had to ask several Walmart employees before I found one willing to get a flashlight and help me look for my keys. He offered an umbrella but I was still dripping wet so I didn’t bother. Out we went into the rain, with lightning flashes so bright they briefly lit the parking lot as bright as day. I found my shoe first, which surprised me because I didn’t expect to find it at all.  The employee found my keys and I was so relieved I hugged him in gratitude.

My van has some new dents and scratches from the shopping carts that were flung into it, but no windows or lights were broken, the solar panels stayed tight, the cargo carrier resisted the storm. Mr. Kitty gave me the “you’re back from the dangerous expedition!” meows, but quickly calmed down and set to his favorite hobby, eating. I counted six trees uprooted around the edges of the parking lot, massive roots exposed to the air.

Reports say the funnel cloud touched down about a mile past where I was. My research suggests this was the fourth tornado this town has seen in 2017, unless I missed one. The storm system was huge, stretching along the entire western half of the U.S. Gulf Coast. Only one person was killed.

Weather Underground tells me the wind was 60 miles per hour at the peak of the storm.  For an idea of what that looks like, here’s a short video of a 60 mile per hour storm from about 6 years ago:

The storm I lived through Sunday night was a 10 on the 12-point Beaufort Wind Force Scale, also known as a whole gale. At sea, it would have created 30 to 40 foot waves. A hurricane, ranked 12 on the scale, comes with winds above 73 miles per hour.

Today I am grateful to be alive and more respectful of the power of sudden storms than ever before. I have lived through a few tornadoes, but always inside a solid house, never outside. Winds that high are like a solid mass with an irresistible force.  My life was at risk, but the wind also saved my life when it picked me up off the ground and dropped me, just in time to miss getting hit by those tables that whisked past my head.

I have talked before about how calm I can be in a true crisis. My autistic neurology sends me into a panic when little things go wrong, but every time I have been in a genuine crisis situation, I have been the calmest person on the scene, guiding people who are standing frozen in their tracks to call for an ambulance, enacting or instructing others in emergency first aid for injured people, putting out fires, finding that one elusive, clever way out of the path of disaster bearing down. When seconds count, I tend to think fast and fall apart later.

I have talked to other Autistics who express similar wiring and related experiences. It’s strange to think that so many of us are people who might get so upset we melt into an emotional puddle because someone ate the last of the breakfast cereal while we were asleep yet when quick thinking matters, we rush forward to save ourselves or others.

My Sunday night could have been a lot worse than it was. But when I think back over it all, I am pleased with my choices. I didn’t see anything I recognized as alarming about the sky — now I have a better idea of what a wall cloud (something I had never seen before) can bring. I am used to the sky turning green before a tornado, but my previous tornadoes were all in Kentucky. Weather is a bit different down here, it seems. Overall, I made fast, good decisions under pressure.

May I never experience sudden severe weather again. But if/when I do, I feel much more confident about my ability to spring to action when the going really gets rough.

The Protective Gift of Meltdowns

turtle

[image description: a tortoise in the middle of the road on a hot, sunny day.  His skin is dark with bright yellow stripes and his shell is ornate, covered with swirls of dark brown against a honey-yellow background. The turtle is rushing to get across the street and his back leg is extended from the speed and force of his dash toward freedom. photo copyright 2017, Sparrow Rose.]


I hate meltdowns.  I hate the way they take over my entire body.  I hate the sick way I feel during a meltdown and I hate the long recovery time — sometimes minutes but just as often entire days — afterward when everything is too intense and I am overwhelmed and exhausted and have to put my life on hold while I recover.

I hate the embarrassment that comes from a meltdown in front of others.  I hate the fear that bubbles up with every meltdown.  Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

We Autistic adults and teens put a lot of energy into figuring out what will lead to a meltdown and working to avoid those things whenever possible.  Parents of younger Autistics also put a lot of energy and work into figuring these things out, both to try to keep triggering events out of their child’s life and to try to help their child learn how to recognize and steer around those triggers themselves. Outsiders who don’t understand will accuse us of being overly avoidance and self-indulgent and accuse our parents of spoiling and coddling us.

I have written about how shutdown can alter brain function in unwanted ways.  Meltdowns also have their dangers and can alter brain function over time.  A meltdown is an extreme stress reaction and chronic stress can damage brain structure and connectivity.

But meltdowns serve a purpose, just as another unpleasant experience that can also re-wire the brain if it continues chronically and unabated — pain — also serves an important and very necessary purpose.

Pain is an alarm system that helps us avoid bodily damage and urges us to try to change something to protect our body. While pain is usually unwanted and something we seek to avoid, without pain we would not live very long because we would not have such a strong drive to eliminate sources of damage to our bodies.

Meltdowns are alarm systems to protect our brains.

That idea is so important I gave it its own paragraph.  And I’ll say it again: without meltdowns, we would have nothing to protect our neurology from the very real damage that it can accumulate.

So often, I see researchers and other writers talking about meltdowns as if they were a malfunction or manifestation of damage.  I strongly disagree.  It is easy for someone outside of us to view a meltdown that way because they see an unpleasant outburst that makes their lives more unpleasant or difficult to be around.  They see someone who appears to be over-reacting to something that’s not such a big deal as all that.  They see someone immature who needs to grow up, snap out of it, or get a “good spanking”  to teach them to behave.

When someone doesn’t experience the hell it is to be the person having the meltdowns, they can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

Let me ask you something:  this is a thought experiment and you don’t have to actually do this, but you might understand better if you actually follow along physically.  Take your finger and poke the softer flesh on the inside of your thigh with it so that you are pressing the tip of your fingernail into your thigh.  Don’t actually damage yourself! You’re just looking for a reference sensation.  Poke it about as hard as you might press a button to ring someone’s doorbell.

If you have long, sharp fingernails that might have hurt a little bit (I hope you were careful.  The goal here is not to injure yourself — just to create a physical sensation.)  It was a quick poke, so it probably didn’t even leave a mark behind, no matter how long your fingernails are.

Now do the same thing to your gums, either above or below your teeth, in that area between your teeth and the inside of your lips.  Oh! You couldn’t even poke it as hard, could you?  Do be gentle with your gums, please.  I repeat, this is not about harming yourself.  You don’t even have to poke yourself at all if you don’t want to.  You know your thighs and gums.  You know without lifting a finger that I am telling you the truth when I say your gums are much more sensitive than your inner thigh.

And you are not “over-reacting”  when you have more pain response in your gums than in your thigh, right?  It’s easier to hurt your gums so your reaction to the same stimulus is much more intense when it is applied to your gum than to your thigh.  You are not self-indulgent or spoiled.  You don’t need a good spanking to get over how sensitive your gums are.  You just need to take extra care that things don’t poke you in the gums.

So what’s my point?  If you are not Autistic — and even more so if you are pretty close to neurotypical — your neurological wiring is more like your thigh.  Life pokes at you a lot and you don’t even notice it.  Much of life’s poking is fun for you.  Some pokes are less recreational but present satisfying challenges.  So when you see an Autistic person having a meltdown you might not even recognize the pokes they have been processing all day long because you don’t even feel them.

But our Autistic neurological wiring is more like your gums.  Except not even that predictable.  Some of our senses may be “hyporesponsive”  and we need to stimulate them to be aware that they are even functioning.  Some of us spin around or pace in circles.  Some of us move our hands or fingers in ways that make us feel better.  Some of us blast loud music with a heavy bass and drum component to it.  Some of us rock back and forth.  Our wiring demands more input than the world’s regular pokes can give us.

Some of our senses are “hyperresponsive”  and we need much less stimulation.  Life’s pokes are like fingernails grinding into our gums and we need to make it stop because we cannot bear the pain.  Loud sounds or high-pitched sounds get to some of us.  Others are overwhelmed by the struggle to understand speech when more than one person is talking at the same time.  Some can’t stand textures of fabrics or foods.

Most people I know are a complex mixture of hyporesponsiveness and hyperresponsiveness.  Most people I know have some senses that are both hypo and hyper responsive, changing over time.  I can’t give you any single idea of a sensory pattern for an Autistic neurology because we each have our own combinations of needs.

Normal Human Variation Includes Variant Emotional Sensitivity Levels

But when it comes to meltdowns, it’s not just sensory input (or lack thereof) that will set off an Autistic’s neurological warning system and throw us into meltdown.  What inspired me to write about this topic today was reading something I had written a year ago.  I spent a few months living in an emotionally abusive situation last year.  The man I was living with for a brief time figured out very quickly how to manipulate my compliance triggers.  He even commented specifically on how easy it was for him to physically subdue me once he spotted the compliance “fish-hooks”  that childhood had left embedded in me.

I’m not going to go into much detail about what he did for the same reason that I shy away from going into much detail about my decade of childhood therapy.  I am working on removing those hooks from my flesh.  The last thing I want to do is instruct others as to where those hooks are embedded and how to use them to steer me like a puppet.

My point in mentioning the incident at all is that I realized after the fact that my meltdowns had been sending me a very clear message I should have heeded immediately.  Instead, I did what I always do: I interpreted my meltdowns as a sign of how damaged I was and how much I needed help to gain self-control. Most of my life, I’ve allowed lovers to convince me to try to medicate my meltdowns into submission.  I have hated them because they seemed to illustrate how flawed and awful I was.  My thought process went like this: I melt down because I’m Autistic and meltdowns are frightening and horrible and who would want to be my romantic partner? I can’t blame people for treating me badly and wanting to get away from me because look at these meltdowns!

My experience last year helped me to finally realize that I was looking at things backwards.

I don’t melt down because I’m Autistic.

I melt down because something in my environment is intolerable and I am having a normal reaction of pain and/or anxiety.  That pain can be from something physical, like an intolerable temperature in the room or a sound that is piercing my eardrums and making me nauseated.  Or it can be something emotional, like internal feelings of frustration or external abuse.

Everyone has meltdowns.  It’s not just an Autistic thing.  But our wiring is different, just like the wiring is different between your thighs and your gums.  Some things that make neurotypicals meltdown don’t bother me.  A whole heaping lot of things that don’t bother neurotypicals make me meltdown terribly.  I’m not deficient in some way; I’m  wired differently.

Meltdowns Protect Us From Harmful Situations And People

One of the things I learned last year is that even when I can’t recognize abuse because I have alexithymia, even when I can’t recognize abuse because my compliance training is kicking in full force, my body and nervous system will send me the message with repeated meltdowns.

What I wrote a year ago:

If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up.

An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns.

All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome.

I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner.

I finally realized all this today. Everything suddenly connected.

And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.

So… I still do hate meltdowns.  More specifically, I hate having meltdowns.  They are hard on me, physically and emotionally.  They are embarrassing, messy, frightening.

But I am grateful that my body has a way to tell me when I’m in a bad situation, even if my mind is not capable of figuring it out yet.  I vow to respect and honor my meltdowns.  This is not the same as excusing my behavior.  This is not the same as giving myself free reign to do whatever, whenever.

I still want to do whatever I can to avoid having a meltdown.  I still want to work on my ability to detect a meltdown on the horizon and remove myself to safety before things go too far.

But I also vow to listen to my meltdowns and pay closer attention to my triggers.  Meltdowns teach me what my nervous system can handle and what is too much for me.  Meltdowns teach me how to take care of myself.  Meltdowns teach me what my nervous system needs.  Meltdowns highlight areas of my life that are not on track.

Sometimes my depression shows me that something is wrong in my life but sometimes depression is just like a wildfire, burning out of control.  The same with anxiety.  But I have learned that meltdowns are always highlighting something I need to address.

Meltdowns protect me.  Some aspects of my neurology make me more vulnerable.  Some remnants of childhood experiences leave me more vulnerable.  Meltdowns fill that gap and send me messages about my life that can help me protect myself.

While I will never enjoy having a meltdown, I promise I will always value the protective gift meltdowns bring me.

 

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.

 

 

Early Intervention

taleidoscope

[image description: a honeycomb pattern of clouds in a blue sky, ringed by the green of oak leaves and grass. An image taken outside a McDonald’s restaurant, holding a taleidoscope against the camera lens.  A taleidoscope is a type of kaleidoscope that reflects the world down a tube of mirrors instead of displaying a collection of bits of colored glass or plastic that form shifting patterns as they move around in their mirror tunnel.]


This is a re-post of an essay that originally appeared on my old blog on September 3, 2015. It is reproduced here without edits or changes from the original form.


We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

What a brilliant way to put it, Megen! Thank you!

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.

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.

 

A is for Autism Acceptance

This post originally appeared on April 1, 2015. The book that resulted from this Autism Acceptance Month project, The ABCs of Autism Acceptance, is available from Autonomous Press.

Autism Acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses.

[image description: A quote card, white with olive green highlights. It says “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses…” – Sparrow R. Jones. Beneath the quote is the word ACCEPTANCE in all capital letters, an ornate font, and olive green. The bottom left corner of the image says FB/UnBoxedBrain, indicating the facebook page of the creator of the quote card.]


A is for Acceptance

You may have noticed in the last half-decade or so that there is a growing trend toward speaking of autism acceptance instead of autism awareness. By now, most of you probably know why people are making that choice, but just yesterday I saw a lot of people arguing about the topic, so I think we still need to make it clear.

Autism awareness, in and of itself, is not inherently bad. By now, most people are aware that there is a thing called autism but, in my experience, most people are not very aware of what that autism thing actually is. So I do, at least partially, agree with the people who say we still need more awareness.

What I have a problem with is the form that awareness tends to take.

A week ago, I had to stop listening to the radio because all the stations were already gearing up for April with lots of “awareness” and lots of advertisements about awareness events. I heard a lot about children with autism and nothing at all about Autistic adults. Not only do we “age out” of most services when we turn 18, but we also become invisible. It’s as if the entire world stops caring about us once we are no longer cute children to worry about and, instead, inconvenient adults to be stuck with.

I heard a lot of scare talk, including hearing us repeatedly compared to diabetes, cancer and AIDS. Diabetes, cancer and AIDS kill children. Autism does not. Diabetes, cancer and AIDS are illnesses laid on top of a child’s underlying identity — they can change a child’s philosophy but they do not change innate aspects of their identity. Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism — it’s autism all the way to the core. Autistic children do not “go into remission,” they develop coping skills and they mature into Autistic adults, and they work to learn ways to communicate with those around them. There might be suffering that can be alleviated — seizures brought under control, gastrointestinal disorders treated, methods learned and sometimes medications taken for mitigating anxiety. Autistic adults often do not resemble the Autistic children they once were — we grow and develop all our lives — but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how “indistinguishable from their peers” they become.

At the center of the autism awareness movement is an organization known as Autism Speaks that functions like a giant magnet, drawing all donations to them. In the ten years that Autism Speaks has been around, local organizations have watched their funding dry up. Autism Speaks dominates the autism charity scene now and, as a result, they have the power to set the tone when it comes to “awareness.” And that tone is one of despair and misery. We are portrayed as burdens who break up marriages and destroy the lives of those around us. We have been compared to “lepers” (an outdated term for people with Hansen’s disease) and our parents to saints for taking care of us. The awareness that is being put forth is shaped around a rhetoric of fear. Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. Only one Autistic person was ever accepted in a leadership role and he resigned, saying, “No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.  I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

So that is autism awareness. That is what we are rejecting.

What is autism acceptance? Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.”” – Kassiane Sibley

“Acceptance is about recognizing that an autistic person is, and will always be, different but not less — even as some challenges are addressed. ” – Amy Sequenzia

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long

“Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do. Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn’t that different. We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people. We need people’s actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don’t. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.” – Alyssa

“Good teaching is based in deep respect for the individual, the cognitive learning style of each student, the shared excitement about the topic of study. Best practice in teaching autistic students isn’t any different, though these faculty would be insulted if I told them so.” – Carolyn Ogburn

“Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be “normal,” he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?” – Kymberly Grosso

“If you have the autism acceptance song in your heart, add Paula and Estée’s voices to your blog rolls, Subscribe to their blogs. Tweet, ‘like’, and show your respect and support to these powerful women. Don’t allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.” – Kerima Çevik

Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are “typical” just because they can’t see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.

“You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you.” – Paula C. Durbin-Westby, founder of Autism Acceptance Day/Month/Year/Decade

ABCs of Autism Acceptance

[image description: a full-color image of the book cover of The ABCs of Autism Acceptance by Sparrow Rose Jones. The cover features a semi-abstract drawing of the alphabet done in rainbow colors and a doodle style of drawing. Copyright 2016, Sparrow Rose Jones and Autonomous Press.]

Autistic Shutdown Alters Brain Function

spanish moss

[image description: You are standing beneath a mighty live oak (Quercus virginiana) in central Florida, looking up at a heavy, gnarled tree branch dripping in Spanish Moss (Tillandsia usneoides). The sun is just hidden behind the branch and its light shines down through the limbs, illuminating the fluffy yet intricate twists of parasitic angiosperm, creating something of a magical, ethereal effect in the process. Photo copyright Sparrow Rose, 2016]


This is a re-post of a blog post that was originally posted on March 30, 2016.  Other than editing pronouns, it is identical to the original text.

Content note: descriptions of shutdown, meltdown, self-injurious activity, stress, brain function.

 


By now, pretty much everyone who knows much of anything about autism has heard of meltdowns — episodes of frustration and panic that seriously disrupt the lives of Autistic people, to varying degrees and amounts per person. But shutdowns don’t seem to get talked about as much as meltdowns and I run into people who, despite the blue-illuminated buckets of “autism awareness” out there, were completely unaware of the phenomenon of shutdown.

I had a pretty bad shutdown last week so I thought I ought to write a little bit about them. The people in my day-to-day life were unprepared to deal with a shutdown and that increased everyone’s stress levels. More education about shutdowns can’t hurt and it could help quite a bit.

Shutdowns and meltdowns are more similar than they might appear on the surface. One (somewhat simplistic but workable) way to think of shutdown is a meltdown turned inward instead of outward, much as some people describe depression as anger turned inward.

My most recent shutdown started off as a meltdown. My brain was going through all its usual short-circuits when some synaptic gap got crossed. Or something. One minute I was out of control, smacking myself in the face, as one does, and the next minute I was on the floor, unable to move. I started to get tunnel vision. My hearing began to get fuzzy. My vision closed and closed like turning off an old tube-driven television, closing down to a tiny dot of light that winked out just as my hearing entirely cut out, leaving me alone in the numbly terrifying darkness.

If you like to get your information from audio and video, you should take ten minutes to go watch Amethyst Schaber’s magnificent discussion of Autistic shutdown on their YouTube channel, “Ask an Autistic.” I’ll wait.

Shutdown is a response to overwhelm. It is a self-protective response — shutting down the circuits before they fry, to use computer/brain analogies — but it is as much a system overload as it is a system failsafe. And too much overwhelm for too long can cause some longer-term shutdown and loss of basic skills. We’re talking everything from forgetting how to tie your shoes to forgetting how to speak. And it can hit at age 14 or age 24 or age 54.

As Mel Baggs explained it: ” Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

I my case, it was just a matter of hours before I started coming out of shutdown, much like an ocean creature finally creeping onto a deserted beach after a long swim across the Marianas Trench of shutdown. But I only had one, isolated shutdown. An extended amount of time living on “personal emergency reserves” due to being forced to operate at a higher clock speed than my chips are rated for, combined with a series of shutdowns would have left me pretty burned out. I’ve gone 17 days in shutdown before, unable to speak or properly care for myself. This is why shutdowns must be treated with caution and this is why going to apparent extremes to avoid shutdown is not “lazy,” “spoiled,”  “entitled,” or any other judgmental adjective anyone has ever been tempted to drop at an Autistic’s feet. Or heap on an Autistic’s head, for that matter, since it’s often on the floor alongside the feet once shutdown hits.

Miller and Loos wrote about shutdowns and stress, both in a manner accessible to laypeople and in an academic paper. Their observations were based on a case study of an Autistic six-year-old girl who was prone to shutdown under stress. The authors found that shutdown behavior gets labelled as conscious avoidance but is more likely an involuntary physiological process caused by “stress instability,” an inability to regulate the body’s overwhelming response to stressors. The authors hypothesize that shutdown begins with the basolateral amygdala (BLA) in the brain and quickly spirals into a debilitating feedback loop: the BLA is involved in experiencing emotions. When the BLA becomes overstimulated, it can become hyperreactive, leading to extreme emotionality, heightened levels of fear, and social withdrawal.

The BLA can quickly become hyperreactive when exposed for too long to corticotropin releasing factor (CRF), a “stress-mediating neurotransmitter.” In other words, stress gives the BLA a hair trigger and the resulting explosions feed more CRF to the BLA, ramping the overload up in a ratcheting cascade of intense panic that finally flips all the breaker switches, resulting in shutdown. This is probably why my own meltdown tipped over into shutdown: I had been stressed for days with multiple meltdowns and my system just couldn’t handle any more stimulation so it shut off to prevent my brain from frying itself. My brain crawled up inside its own virtual Faraday cage to wait things out.

In the case of “the SD child,” Miller and Loos observed that one shutdown would make her extra vulnerable to more shutdowns during the following three weeks. It takes that long for the BLA to “come back down” from its hyperaroused state. It’s pretty easy to see how quickly things can take a bad turn if the brain is not given time to heal. This is the low-detail version of why I have a medical discharge from the Navy and why I was able to hold a series of minimum-wage jobs before the military but unable to get a job at all afterwards. When I signed up for the Navy, I didn’t understand my neurology. It was a devastating blow to not only fail at boot camp but come out of it so debilitated I couldn’t even keep a roof over my head any more.

This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. This is why I warn so often against shaming Autistics for not “pushing the envelope” the way you think they ought to instead of the way that protects them from damage. Of course it’s healthy to step out of one’s comfort zone from time to time. What you need to remember is that the entire world is outside of an Autistic’s comfort zone. We live our whole lives outside that zone. Please recognize and honor that. I just can’t say that enough: we are trying and the obstacles can be as massive for us as they are invisible to you.

Treat shutdown  as the medical situation it truly is. Help us get away from bright lights and loud noises. Help us find a quiet space to re-regulate our nervous system. And be gentle with us as we recover from a neurological episode, understanding how delicately balanced our brains are after marinating in the biochemicals of stress. We need support, not blame. We need peace and stress-relief, not punishment. And, always, we need love, understanding, and acceptance.

What Would An Astronaut Do?

cloudy sky

[image description: looking out into space from planet Earth during daytime.  In the upper left corner of the picture, tree branches are silhouetted against an ethereally glowing sky. The late morning sun is hidden behind a low-hanging bank of clouds, illuminating them against a sky that ranges in intensity from clear aqua to dark lapis. Photograph copyright 2016, Sparrow R. Jones, Taken in southeastern Gainesville, Florida.]


I winter in Florida, because it’s warmer and where my mailing address is.  Although I am nomadic, my official state of domicile is Florida.

I winter in Gainesville, because the city has laws to protect people like me. So long as I am legally parked, it is not against the law for me to sleep in my vehicle in Gainesville. This may seem ordinary if you’ve never tried living the way I do, but most clement places enact measures to keep “undesirables” under control. Every major city in California now has anti-homelessness laws on the books that were written to protect the people who do not like to see homeless people in public (rather than being written to protect the actual homeless people, themselves.)

If I wintered in California, I would regularly be at risk of having my van impounded as punishment for living in it.  I know, I know. It makes no sense to fight homelessness by taking away someone’s shelter. But it’s a real risk in many places. As for Texas, I have been hassled by the police after spending 18 hours at a designated campground.  I’ve never been bothered here in Gainesville for openly living my mobile lifestyle.

Gainesville is also a safe place to transition my gender expression. The mayor of Gainesville, Lauren Poe, recently wrote on Facebook: “If you are trans and feeling under threat, come to Gainesville. We respect you, love you and if need-be, we will protect you.” In a nation that seems obsessed with which bathroom I use, it is a great comfort to spend my winters in a city that added “gender identity” to their anti-discrimination laws in 2008.  Gainesville is a safe place and I can feel my spirit grow when I spend time here.

This winter, I read (in audiobook format) Andrew Chaiken’s epic 1994 book about the Apollo missions, A Man on the Moon, as I drove around Gainesville’s streets filled with murals and quirky folk art. When Mr. Kitty and I take a night trip down 8th avenue, through the Solar Walk, I like to imagine that we are traveling through space in our Escape Pod.  The sculpted concrete stars and planets on the sidewalk beside us are heavy echoes of the originals, gleaming high above. We are surrounded by stars.

It was on one of those night runs down the Solar Corridor that I realized my current life motto: What would an astronaut do?

I have been on a quest the last several years to improve my emotional self-regulation. I have progressed tremendously as anyone close to me will readily attest. What would an astronaut do? An astronaut would remain calm, particularly in a crisis.  An astronaut would not give up when faced with a problem, but rather think things through, logically and carefully, finding tools in his environment to achieve his goals.

The Apollo 13 mission nearly ended in as much tragedy as the Apollo 1 mission.  A cabin fire in Apollo 1 killed all three astronauts — Grissom, White, and Chafee — on the launch pad in 1967.  For a time, it appeared that the pilots of Apollo 13 — Lovell, Swigert, and Haise — would suffer a similar fate after an oxygen tank exploded, two days out from Earth, damaging the Service Module, thus also rendering the Command Module useless.  The interior of their spacecraft began losing life-sustaining heat quickly, water was in short supply, and the astronauts were at risk of asphyxiation from their own exhaled carbon dioxide.

What would an astronaut do? Get on the radio and calmly announce, “Houston, we have a problem here.”  Troubleshoot the problem along with help from Houston.  And build a carbon-dioxide scrubber out of a flight manual cover, parts from their space suits, and a pair of socks.

I have been working to incorporate the lessons of the Apollo astronauts into my daily life:

Stay calm.

Maintain logic and problem-solving skills such as flexible thinking and improvisation.

Focus on the mission.

I’ve particularly been spending a lot of time thinking about what it means to focus on the mission.

Focusing on the mission means that the activism and advocacy work we Autistic adults and non-autistic parents of Autistics are doing is more important than interpersonal squabbles.  Sometimes we have goals so incompatible that we cannot work together, but whenever I am seeking the same goal as someone else, it is important for me to promote their work, no matter whether we get along as individuals. Focusing on the mission means trying to get along with everyone, but also staying socially detached enough to avoid allowing my feelings about a person affect my respect for their work.

I was writing something the other day, in which I mentioned “my mission.”  I have been thinking about my mission for a long time and, more and more, I have been wanting an actual mission statement. I talk about being on a mission, but I don’t always communicate that mission in specific, clear terms.

So I would like to take this opportunity to share my mission statement:

-=+*+=-

Pre-amble:

All people have inherent worth; human life cannot be valued in the coin of productivity. What makes people matter is that they exist.

There are no “special needs.”  All humans have needs and by calling some needs “normal” or “ordinary” and other needs “special,” we set one group of people aside as potential “burdens” who should be grateful for the “special treatment” they get.

Access is crucial for full participation in society.  The principle of universal design must be extended to all, making all public access accessible to people regardless of mobility, neurotype, physical appearance including race and size, gender, communication style, support needs, and more.

Respect autonomy and presume competence. The children of today must not be forced to suffer tomorrow the things we endured yesterday.

I yearn to hand an oxygen mask of survival and a flotation device of self-worth to every human being.  I can only achieve this work if I keep one oxygen mask and one flotation device for myself.

Mission:

My mission is to work every day to maintain my own survival so that I can help others maintain theirs. My mission is to add more love to and remove more stigma and misunderstanding from the world. My mission is to join every day in the effort to shift society’s views to a more compassionate, understanding, accepting position from which diversity can truly be celebrated rather than feared.

-=+*+=-

This is my mission and every time I ask myself,  “what would an astronaut do?” and the answer is “focus on the mission,” this is the mission.  This is what I am striving to draw more of into my life and, through me, into the world: more love, more understanding, more thriving.

And now I must carry on with the mission. Do carry on with yours and insofar as our missions intersect, may we always merge our efforts and achieve greater success than we each could have grasped alone.

Alexithymia: I Don’t Know How I Feel

exeter flowers

[image description: some white flowers, species unknown, in a graveyard in Exeter, Rhode Island. Image copyright Sparrow R. Jones]


When I was a child, my mother would angrily ask me why I had done or said something and I would respond, honestly, “I don’t know.” This response did nothing to relieve her anger because she couldn’t conceive of someone not knowing why they behaved the way they did, so she assumed I was lying and just didn’t want to incriminate myself by revealing my true motivations.

 

Sometimes now, from a distance of decades, I can explain my behavior. Time, experience, and an increased vocabulary have helped me to understand my younger self better and be more well-equipped to communicate my childhood thoughts than I was at the time.

 

But just as often, I still have no idea why I did or said the things I did because I still have so little connection with or understanding of my emotional life, both in childhood and today.

 

I have a condition called alexithymia. The name comes from Greek roots: a-, meaning ‘without’, lexi, meaning ‘words’, and thymia, meaning ’emotions.’ Without words for emotions.

 

That’s a pretty good name for it, because that’s pretty much what it is. I do have emotions — quite strong emotions, in fact. Much stronger than I wish they were. But when I try to understand what I’m feelign or why I’m feeling it, I am at a loss.  I can generally tell you (sometimes after pausing to do an internal assessment first) if I’m generally feeling “good”  or “bad.”  I can usually put words to the emotions that are painted in very broad strokes: happy, sad, angry. But that’s about the limit of my emotional vocabulary.

 

To me, emotions are like storms at sea.  They are mysterious and unpredictable. I feel like I can go from zero to furious in 0.4 seconds because I am unable to see all the intermediate shades of emotion along the route to furious, so when I finally arrive at that destination, it feels to me as if it came out of nowhere.  I think it often seems that way to onlookers as well, because my Autistic style of emoting is not always very easy for people to understand.

 

I regularly get feedback from others who have interpreted my “contented”  as “distraught” (it’s called “resting face,”  people.  Mine apparently has a sad/angry tone to it, so I have learned that I have to intentionally add artificial smiles to my face if I don’t want others to accidentally mis-read me as dangerous and unapproachable.) I’ve also gotten feedback from people who see “nervous”  or ” anxious”  when I am actually “energetic and happy.”  It’s called stimming, folks…..it’s not always a sign of anxiety in people with my neurology. Ironically, I have been riddled with anxiety but when I discuss it with someone who doesn’t know me extremely well, they think I’m exaggerating because they can’t see the external signs of anxiety they are accustomed to reading from non-autistic people’s body language.

 

I try my best to live in the deep waters beneath that stormy surface. Meditation helps a lot.  My role model is Mr. Spock from Star Trek.  Vulcans have emotions but practice meditation and other rituals from an early age to learn to control their emotions rather than allowing their emotions to control them.  I work hard to replicate fictional Vulcan emotional training as best I can in my frustratingly non-fiction  human life. Sometimes it even works.  I get better at it as time goes on. But I still “lose it”  on a regular basis.  It’s a work in progress.

 

A 2016 article in Scientific American says that 10% of the general population has alexithymia while 50% of Autistics have alexithymia. I have seen other sources estimate higher numbers, but 50% is a good, conservative estimate.  My reading indicates that alexithymia in the non-autistic population is very oftne the result of an emotional trauma.  No one (to my knowledge. If you know of a case, please share it in the comments) has studied whether Autistic alexithymia is the result of emotional trauma (which wouldn’t surprise me, since growing up Autistic in a non-autistic society can be intensely traumatizing) or whether it’s part of how many of us are wired.

 

The difference — autism with or without alexithymia — could explain many of the differences among Autistics, for example, it might be part of the explanation for why some of us (like me) avoid eye contact while I’ve met lots of other Autistics who report having no trouble at all with making eye contact with others.

 

Having alexithymia (and some states-of-being that seem closely connected for me, such as a very low level of body-awareness) means that when I figure out that I am feeling bad, I have to play detective to try to understand why I am feelign bad and what, if anything, I should do about it.

 

I have developed a sort of check-list to help me navigate the experience of being embodied.

 

First I have to figure out if I am in need of my checklist. Here are some of my warning signs that I’m not functioning optimally:

 

  • I am screaming
  • I am crying
  • My body is shaking
  • I am obsessively going over unpleasant past memories
  • I am spontaneously (meaning I am doing it during my personal time, not as research for something I am writing) conducting Google searches  on topics related to unpleasant human interactions and how to cope with them
  • I am dizzy or experiencing some non-typical (for me) cognitive difficulties
  • I have lost the ability to speak
  • I find myself unwilling to go someplace or do something I either enjoy or know that I need to do in order to keep my world intact (like the tax office or the social Security office)
  • I am not sleeping (or sleeping too much)
  • I am not eating (or eating too much)
  • I am constantly thinking bad thoughts about everything the people around me are doing

 

These are my main warning signs that I need to run a self-diagnostic check.  If you have similar difficulties to the ones I discuss in this essay, you might want to write out your own list of warning signs.

 

My diagnostic checklist starts with medical emergencies and works its way down from there.

 

  • Check my blood sugar
  • Check my temperature
  • Assess whether I need to use the bathroom (strange though it may sound to those who don’t experience this, I am often unaware of physical needs unless I specifically direct my attention to the body I live in and focus on the physical sensations it is experiencing.)
  • When did I last sleep? Am I sleep deprived?
  • When did I last hydrate?
  • When did I last eat?
  • Am I experiencing an emotion? Try to discern whether it is mostly anger or mostly sorrow. Continue to break it down from there, looking for physical clues.

 

A book I’ve found helpful in this last task is: The Emotion Thesaurus.  It is a book for writers and it includes descriptions of the physical things that happen to the body when experiencing 75 different emotions. I would love to have the emotion body responses turned into a deck of cards I could carry in my pocket.

 

The only emotion cards I’ve ever seen are profoundly unhelpful for me because they just have things like photographs of human faces experiencing feelings (useless for me as I can’t read feelings from a photograph) or even worse, cartoon drawings of emotions.  I need the body experience descriptions like in the Emotion Thesaurus to help me identify the emotions my body is having.

 

Usually by this point in my checklist I’ve found my trouble.  If not, I just try to do what I can to mitigate the damage — isolate myself from others, be kind and nurturing to myself, try to dive beneath the surface if I can and if I can’t, I try to wait for the storm to blow over and the sea to become calm again.

 

I wish I had more to say about emotions and alexithymia, but I’ve pretty much hit the end of what I have on offer for this topic.  If you’ve read my blog for very long, you’ll realize what a statement that is, because my standard blog essay is twice the length of this one.  Struggling with emotional lability and alexithymia has been the battle of a lifetime for me and I sometimes wryly joke that I’ll finally get it figured out when I’m lying on my deathbed at 120 years old.  Things do seem to be getting better, though. My 40s have been much better than my 30s.  My teens and 20s were such horror shows I’m amazed I survived them. I predict my 50s will be my best decade yet.

 

If you’re a parent and you’re struggling with your child’s emotions, you might feel like life is punishing you, but I’m here to tell you that the real hell is the one your child is living through.  I know it’s hard to be gentle and understanding with someone who yells and throws things, hits and bites. But I’ve been that person for a lot of my life and gentle understanding is exactly what we need most.  Help your beloved person learn how to trouble shoot and do self-checks.  Help them learn how to decipher and name emotions.  Help them find emotional management techniques that work for them.

 

Don’t get upset if they reject meditation or breathing techniques.  We’re all different and some Autistics get *MORE* anxious when they try to use these tools. Don’t be afraid to try medications but work to avoid “drugged zombie”  as a chosen result.  It might be easier for people around us when we’re doped out of our emotions, but it’s not good for us.  Vow to only use medication that enhances an Autistic’s life and coping skills, and never use medication or dosage levels that operates as a “chemical straitjacket”.   Our responses to medications are often non-standard so be prepared to experiment with much smaller (or much larger) doses than other people need.  For example, Temple Grandin recommends using only a 1/3 dose of anti-anxiety medications when prescribing for Autistic people.

 

I hope something, anything, I’ve written here is helpful to you.  I’d love to see a lot of discussion in the comments section.  This is a topic I’ve struggled so hard with  that I feel inadequate to even address it at all.  But it needs to be said, so here I am saying it.  Be well, gentle readers, and may your emotions ever serve you rather than the other way around.

 


edited to add:

A linkback from another blog that linked to this post included a link to an alexithymia questionnaire that quanitifes one’s level of Alexithymia.  I scored 149, “high alexithymic traits.”

 

The other blog entry is: Can you name all those emotions?
And the emotion blindness questionnaire is: Online Alexithymia Questionnaire

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