Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Emotions

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.

 

 

 

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.

 

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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