Autistic People Aren’t Robots

If anything, our feelings are a thousand times more intense than yours.

It’s a strange sensation, discovering that you are part of a minority at the age of 58. This is pure speculation on my part, but if you know something like that all your life, I assume you would not be taken by surprise when people around you spouted ignorant assumptions about who you are. Sure, those prejudices would still be unacceptable and annoying, and even potentially scary, but they wouldn’t shock you. You’d be more prepared for the stupidity by the time you were pushing 60 and had dealt with it all your life.

On the other hand, I feel as though I’m in a frequent state of shock ever since I was diagnosed with Autism Spectrum Disorder back in December. This is an entirely different point of reference for me. I’m learning that, in addition to a drastic alteration in the lens through which I view the world, my diagnosis has also altered the way that people look at me.  

Had I thought things through, perhaps I wouldn’t have disclosed my diagnosis to so many people. But I felt vindicated and relieved at the time. Finally, an explanation! I felt like shouting it from the rooftops. That, and my particular place on the autism spectrum comes with a self-destructive need to overshare.

Whatever. It’s out there. You can’t un-ring a bell.

What really astounds me is that many of these people have known me for years, and yet they’re treating me differently now that I have this label. In a few cases, I could actually see the moment their view of me changed. It is almost as though I’m their eye doctor, and they’re looking at me through that lens machine, and I’m flipping the lenses, and saying, “Better (click), or Worse?”

Worse, apparently.

I came upon a quote recently in an article in Vanity Fair about the rampant toxic racism that was behind the scenes during the filming of the series, “Lost”. I think it applies to my situation as well:

“No one wants to be defined by one aspect of their identity, but neither do people want to feel forced to suppress who they are so that others never feel any discomfort”

Maureen Ryan, in “Lost Illusions: The Untold Story of the Hit Show’s Poisonous Culture

The gut reaction in these situations seems to be to try and “save me” from my diagnosis. “You don’t look autistic!” “That can’t be right. You’ve always seemed normal to me.” “That can’t be right. If anything, you feel too much rather than not enough.” “Why are you making such a big deal out of this?” “I would have never guessed by looking at you.”

Hello! I’m still me! I promise I’m not contagious. And autism is a diagnosis, not a jail sentence. I’m actually coming to think of autism as a “trait”, like blue eyes and brown hair, rather than a “diagnosis”, which implies that I’m sick or flawed and need to be cured. There is no cure for autism, and even if there were, I’m pretty sure I wouldn’t seek it, because it would change the person that I am. I don’t really want someone experimenting with my brain function to that extent.

Of course, that’s easy for me to say, having been able to “pass” as relatively “normal” for decades. Not every autistic person has that luxury. I’m considered to be a level 1 autistc, in other words, I could use some support with my social interactions and my executive function and coping skills, but I’m definitely not a severe autistic.

Level 3 requires very substantial support, often 24 hours a day, and can come with an inability to verbalize and a state of near-constant agitation. Some, but not all people on level three have a low IQ. It would be all but impossible to live independently on that level. Those on that part of the spectrum may appear to be totally unaware of the outside world. But scientists are starting to discover that that may or may not be the case.

I watched a documentary called The Reason I Jump, and now I’m reading the book it was based on. But in the documentary, you meet two non-verbal autistics who learn to spell out their thoughts by pointing to one letter at a time on a chart. And it turns out that they may not speak, but they, in fact, have very intelligent thoughts. No wonder the meltdowns of some non-verbal (along with some verbal) autistics can get violent. Can you imagine being coherent on the inside, but being unable to pierce the chaotic autistic wall that surrounds your brain in order to make your thoughts known to others? That has got to be frustrating beyond belief.

I know what it’s like to be misunderstood. There’s no bigger insult than not being taken seriously. It’s horrible when people constantly seek outside verification before they will believe what you are saying. This has happened to me my entire life, and it hurts.

The worst mistake a neurotypical person can make is to assume that autistic people do not have feelings. If anything, our feelings are a thousand times more intense than yours. It’s like being a full-body burn victim and having people poking you all the time. Our biggest societal challenge, in my opinion, is that many of us have varying degrees of skill at expressing those feelings or properly interpreting the feelings of others.

I understand that Hollywood has done a lot to reinforce the robotic stereotype. Rain Man is only the tip of the cinematic iceberg.

Believe me, we feel. We learn, we grow, and we aren’t going anywhere. So, please be kind.

To quote Shakespeare, “If you prick us, do we not bleed?”

We sure as hell do. But we might be doing so internally. Just because you can’t see it doesn’t mean it doesn’t hurt.

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Favorite Emotions

Every language is inadequate in terms of the vocabulary of emotion.

Complex emotions have always drawn me into their embrace, wrapped around me, woven themselves through me like a detailed tapestry whose design is, by necessity, as unique to me as it is to each and every one of us. To say you are happy or sad, excited or bored, in love or enraged, is to oversimplify your emotional state. Any genuine, fully-explored emotion is bound to be so complicated that it cannot truly be labeled. These feelings can only be described, and will only be understood by those who take the time to listen.

There is no adequate term for that feeling of intense pride and love mixed with the fear and bittersweet envy you feel for the young people in your life whom you know will soar higher and fly further than you ever did. Excelsior, dear ones! Don’t fly too close to the sun, but please do get a better look at it than I have.

And what do you call that laughter through tears moment when someone gazes into your most intimate pain and relates to you and it so well that they’re able to blast you out of it with a well-aimed, yet compassionate and humorously cynical barb? And then there’s that sharp, fleeting emotion that comes directly after that, which makes you think, “Dammit, do not make me laugh about this!” even as you are thinking, “I love you for making me laugh about this!”

Disappointment is not an adequate word for the feeling you get when someone sees something within you, or something that they believe is missing from you, when you know that conclusion is patently false, but there’s nothing you can do to change their minds. It’s never pleasant to be misunderstood by someone you hold in high esteem.

Even if a scary movie makes you jump or even scream, that feeling isn’t fear, per se. There’s an exciting frisson that ripples through it because you know you chose this experience, and therefore it’s also an adventure. Pure, distilled terror is something I have felt more than once, and I can assure you, it ain’t no movie.

I absolutely love that sense that you are exactly where you’re supposed to be, doing exactly what you’re supposed to do, and that your whole messy, beautiful life is what has led you to this moment. I’ve only had that feeling a few times in my life, and I’m glad of that, because it makes the experience all the more precious when it does wash over me. If anything truly does flash before your eyes when you are dying, I genuinely believe that these particular moments must surely be included. That’s why I don’t fear natural death, despite the fact that I don’t want to rush it along.

The reason I was inspired to write this post is that I was experiencing yet another of my favorite emotions: that feeling of shock, awe, admiration and surprise that you get when you discover that there is another facet of a friend’s personality that reveals a talent, passion, or expertise that you never expected existed. That complex cake of emotions is heavily frosted with a feeling of excitement that you’ve now got the opportunity to explore this other aspect of your friend, and that by doing so, you will learn even more about him or her, and by extension, you’ll learn more about yourself.

So it was today, when I was chatting away with my dear friend Areiel, perhaps the most global human being I know. He casually mentioned that in addition to the amazing life he leads that I know about, which is filled with a deep love for his family, a job that allows him to travel a great deal, and one that lets him effect positive change in the world as we know it, he also has a radio show.

Wait. What?

I mean, I knew he had an intense love of music, but I did not know that he had been a radio DJ in his early 20’s, and now, 35 years later, he has picked it back up again. And he has combined that avocation with his love of travel and his natural ability to teach, to create a show entitled Musical Highways, which you can listen to here.

And listen you should. Not only do his musical highways lead you all over the world, but Areiel also gives you a lot of background information about the music he’s featuring in that episode. I guarantee you will hear from artists you’ve never heard before, and you’ll learn oodles of stuff in the process. That is a delicious musical treat indeed.

I’m not sure Areiel considers himself a teacher, but he has taught me much over the years. We have talked about politics, philosophy, music, art, travel, and a whole host of other subjects. He has given me some excellent advice. He never fails to cause me to look at the world in ways I may not have considered independently. Because of that, this feeling I had in learning that the man also has another side to him that I have yet to explore is akin to discovering that you’ve somehow overlooked one of the very best books written by your favorite author.

English may have a higher word count than any other language, but it still is inadequate in terms of the vocabulary of emotion. But it would be a daunting task, indeed, to get the emotional recipe exactly right for every person and every mood. The very intricacy of emotions is what I love about them most, even during those quite frequent and frustrating moments when I realize that the very complexity of these emotions means that I am being utterly misunderstood by those around me.

It’s complicated.

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Musical Emotions

Where is the point of connection between sound and emotion?

Our hero declares his love. The music swells. They kiss. And all’s right with the world.

If that movie trope replaced the sound of the swelling music with the sound of crickets, it just wouldn’t be nearly as romantic, would it? Music has a way of evoking emotions in us. It’s really rather fascinating when you think of it, that all of us (in western culture, anyway) pretty much have the same emotional responses to various types of background music. Because all it is is sound. How do we link feeling to it? Where is that point of connection, exactly?

I used to have a side gig captioning movies and television shows. (It was kind of fun, actually, but the pay was horrible. That’s why I quit.) Because of that, I pay very close attention to the work of other captioners. “I wouldn’t have done it that way,” I sometimes think. People don’t realize how much flexibility there is to that job. But the other day I was kind of amused when a captioner wrote “Poignant music” as a description.

I mean, in context, it made a lot of sense. But in reality, if you are deaf, how would you imagine a soundtrack to the word poignant? Even for those of us who can hear, does any particular music pop into your head when you read that word? And yet most of us, reading that while watching the movie, would get the point.

Another fascinating nuance to this topic is that the music in a lot of movies is generic, and created long before the script is ever written. There’s a whole category called Production Music or Library Music that is kind of one size fits all as the situation requires.

For example, a production music company may ask a musician to give them something upbeat and suitable for industrial documentaries. And that’s all the notes these musicians get. Or perhaps they’ll ask for something western themed, or fight scene, or what have you. And from that, they compose, and we hear and respond appropriately. It kind of makes you think about how easily our emotions can be manipulated.

If you want to enter a whole new world, I suggest you go to Youtube and do a search of Library Music. It’s really rather fun and can take you to a lot of unexpected places. At least emotionally.

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Are You Vacuum-Worthy?

Then consider yourself in an elite group, indeed.

Ugh. I hate house cleaning. I’m not unhygienic, mind you. I don’t have creatures residing in my sink or anything like that. But let’s just say that everything does not always find its way back to its place under my purview.

And yet, if someone whose opinion I care about is coming to visit, I will spend days vacuuming and straightening and organizing. Heavy emphasis on the “whose opinion I care about” part. I hate to say it, but the older I get, the less I care about the opinions of most people. Seriously, I just can’t be bothered.

If I ever have any doubt about the depth of my feelings for someone, I simply have to see how much effort I’m willing to put into gaining their good opinion. And that’s ironic, because those people, in general, are the very ones whose good opinion is pretty much guaranteed.

It kind of reminds me of the Seinfeld episode in which Elaine decides who is, and is not, sponge-worthy. With me, the question is, are you vacuum-worthy? If you are, my friend, consider yourself in an elite group, indeed.

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Examining Irritation

I have no idea why so many people have overlooked the memo that I am Queen of the World, but there you have it.

True confession: I get irritated by stupid stuff.

It’s not that I enjoy irritation. In fact, it irritates me. But sometimes it feels beyond my control.

The good news is that the older I get, the more level headed I seem to become. I think part of that is due to the fact that I can’t work up the energy to be annoyed as often as I could in my younger days. I just can’t be bothered.

Oh, but there still are things. Someone cutting ahead of me in line. People blocking grocery aisles to chit chat. Rude individuals. All things Trump. The common denominator here is that people aren’t playing by my rules. I have no idea why so many people have overlooked the memo that I am Queen of the World, but there you have it.

Another thing that has improved with time is my self-awareness. I am getting better at seeing the physical warning signs of my irritation so as to nip it in the bud. Is my heart rate increasing? Am I feeling adrenalized? Am I starting to fidget? Uh, oh. Time to evaluate the situation.

First off, am I already Hungry, Angry, Lonely, or Tired? Then I need to H.A.L.T. Because any one of those four states are bound to cause me to overreact. At times like those, I’ve been known to look for a reason to be irritated. How stupid is that?

Next, I need to really look at what I’m feeling. Sometimes irritation is a mask for other, less comfortable emotions. Fear. Fury. Depression. Grief. Disappointment. Dissatisfaction with your relationship with the person who is triggering your irritation. A feeling of being disrespected. My own stupid impatience when someone doesn’t comply with my self-imposed time line.

In many cultures, we are taught to suppress “negative” emotions. But emotions don’t hold a positive or negative charge. They are what they are. You feel what you feel. If you suppress that, it’s just going to find a way out in other ways, such as irritation when your boyfriend leaves his dirty socks in the coffee mug. It helps to check in with yourself about what you are really feeling. (For example, you’re annoyed, and frankly a little scared, that he doesn’t care enough about your feelings to put the mug in the dishwasher and the socks in the hamper.) If you aren’t adept at that, and many of us are not, I suggest that you consider therapy. I highly recommend it.

Another thing I try to do is a reality check. When I get irritated, I try to figure out which one of my rules is being violated. (As in: footwear and kitchen utensils don’t mix.) And then I try to remind myself that a) people are not mind readers, and b) not everyone goes by the same rules. (If both the footwear and the kitchen utensil are dirty, perhaps your boyfriend doesn’t see their intermingling as a big deal.) Then, maybe the two of you can discuss your versions of these unspoken rules and form a consensus. That would be ideal.

Probably the most important thing to think about, though, is that you are never going to be able to control other people’s behavior. Never. That doesn’t necessarily mean that they aren’t partially to blame for not hearing you when you tell them, however ham-handedly, that their behavior triggers your irritation. What it does mean is you have total control over your side of the equation. You can change the way you react. You can examine it, deconstruct it, and make alterations within you. You might be surprised. That could lead to changes in the other person, too.

But take your irritation seriously. It’s horrible for you and everyone around you. Here’s when irritation gets out of hand:

  • When you find yourself annoyed at what you know, logically, is a trivial thing.

  • When you get aggressive by yelling or being hostile or becoming violent.

  • When you have a chronic problem, such as getting annoyed, over and over again, at the same thing. (How is that working for you?)

  • When your temper gets worse when you drink or take drugs.

If any of the above applies to you, you have an anger management problem that you should take seriously, and I encourage you to seek help. Your life doesn’t have to feel like a miserable nightmare, and those around you shouldn’t have to walk on eggshells, either. Life is too short for everyone concerned.

irritated

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Honne and Tatemae

Recently a dear friend introduced me to the Japanese concepts of honne and tatemae. I had never heard these words before. Without her, I would  probably just have assumed they were the names for a Japanese pop culture couple or something. (They do say that opposites attract.)

After reading several articles on the subject and watching this interesting little video, I think I have a grasp of it now. Honne is basically your true feelings and/or thoughts in any situation. (I will have no trouble remembering that word, because it kind of looks like “honest”.) I’m quite good at honne most of the time. If you ask my opinion on something, I’m always happy to give it to you, often to the point where it gets me into trouble. (Because, sorry, those shorts actually do make you look fat.)

Tatemae is what I struggle with. It’s kind of the public face you show the world in order to avoid conflict, spare feelings, and/or further your goal. It can be as innocuous as saying, “I’ll call you!” after a particularly bad date, or as insidious as, “Corruption? No corruption in this organization!”

Tatemae definitely has its uses. Unfortunately, it will often get you further in the work environment. “Yes, boss, you are doing a pathetic great job!” (This is probably why I’m a bridgetender instead of a CEO. I just can’t do it.)

And if you are trapped on an island with 127 million other people, avoiding conflict is all the more crucial. Not that tatemae is exclusive to Japan. In fact, I seem to be over my head in a sea of it here in Seattle, and I’m not sure if I’ll ever adjust to it.

But perhaps I’m better at it than I think. As I blogged the other day, friends tell me that the things I write here are not like the person that they know. That has a lot to do with editing, and my desire not to be perceived as a nut job. So, hey, there’s hope for me yet, if one considers tatemae to be a hopeful thing.

Corruption? No corruption here…

Tatemae

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Why Is This One Different?

I have been hearing a lot of people saying that those of us who didn’t vote for Trump need to “get over it,” “quit our whining,” and “move on”. It’s not the first time my person didn’t win. I mean, I’ve lived through Reagan and both of the Bushes, after all. And I did, in fact, get over it. But this one is very different.

Why is it different? Even I couldn’t answer that for quite some time. I just knew I felt and still feel sick. I feel defeated and depressed and discounted and demoralized. I feel scared and in shock. That was not how I felt after past defeats. At least not to this extent. But I couldn’t put it into words, and that goes against my very nature.

Then I read this article by Phil Shailer in the Sun Sentinel. I strongly encourage you to read it. It’s extremely short and it’s very much to the point.

In a nutshell, this isn’t sour grapes because Trump is about to be president. It isn’t about me rooting for the losing team. No. It’s about what your support of him says about those of you who voted for him, and about us as a nation.

You may not be a racist, but you just supported one. You may not grab pussies, but you just gave the keys to the kingdom to someone who condones that and thinks it’s funny. You gave the go ahead to someone who wants to destroy the lives of immigrants when you yourself are most likely descended from immigrants. You are shouting yes to someone who is striking fear in the hearts of your neighbors, both foreign and domestic, and you just took away our access to health care and free speech and a safe environment.

By voting for him you are telling our children that it’s okay to be a bully, it’s okay to make fun of the disabled, it’s okay to judge women by their weight, it’s okay to encourage violence. By voting for him you give all of his behavior a stamp of approval. And that’s an ugly thing to see.

The truth is, this country is the same as it was a few months ago. It’s just that now the tumors that used to be hidden deep inside are all on the surface, and that’s making it a lot harder to see its beauty. So you’ll just have to forgive me if I feel the need to mourn, and no, I quite likely won’t get over it.

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On Staying Put

The worst mistake I’ve ever made was staying for decades in a situation that made me unhappy. I now look back on those years with sadness and wonder what I could have achieved if I only had the courage to listen to my gut. But no. I played it safe. I didn’t want to hurt anyone’s feelings. I thought that by putting everyone’s needs ahead of my own, I was being a good person. The truth was that I was afraid to take risks. What a massive waste.

In essence I held myself back, and by extension I’m pretty sure I held everyone around me back as well. I thought I was being kind by not rocking their boats, but actually I was being selfish. By not allowing myself to grow, I was stunting the growth of the people I cared about most.

Now that I’ve started leaning toward my growing edge, I’ve discovered that I’ve made a positive impact on a lot of people without even trying. I’ve been told that by doing my thing and living my joy, I’ve influenced others to take chances. I’ve gotten people moving and applying for jobs, and actually taking their talents seriously. I’ve encouraged people out of toxic relationships. I’ve introduced people who would otherwise have never known each other, and that’s sparked some amazing collaborations. I’ve shown people different ways to look at the world. I feel as though I’ve opened some sort of flood gate and the abundance therefrom is washing over more than just me.

Am I taking credit for other people’s lives and choices? No. Of course not. Life is way too complex for that. But I have to say that I’m noticing this existential shift all around me, and I don’t think I’d be seeing it, feeling it, or experiencing it if I had simply stayed put. I had to get into the flow to be a part of it, to increase that flow.

The worst thing you can do is make choices for yourself based on how others might feel or react. Doing so assumes that their present existence is their best existence. That means you are underestimating them. You have no idea how your changes might free them up to make changes of their own.

So don’t stay put. Don’t cling. Don’t become stagnant. Move! Grow! There’s a big old world all around you. Experience it!

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“Toughen Up”

On the heels of my blog entry “Having Your Heart Broken by a Career Choice” I got a lot of comments from people in the Dental Lab industry, many of which were very constructive and informative and have greatly influenced my concept of what I need to do as I move forward. But just as many were along the lines of “Waa waa waa,” “Toughen up,” “You need a thicker skin,” “You’re too emotional,” and “You sound like a crybaby.”

Comments of that nature, regardless of whom they are directed at, never fail to amuse me. Yup, I am an emotional person. When something makes me truly happy, it can bring tears to my eyes. When I hear tales of horrifying abuse or injustice, I may also shed tears. And most of all, when I’m angry I tend to cry, which can be confusing because it may elicit sympathy when none is needed.

But what I am not is someone who throws tantrums, tries to get attention, incites drama, is manipulative or expects pity. I don’t pick fights, take delight in being cruel, intentionally push people’s buttons or insult others. I set great store in being respectful.

I also don’t view myself as a victim. Yes, sh** hits my fan, and as often as not that isn’t of my own doing. But I have a clear sense that everyone has a fan, so I wipe mine off, do what I can to prevent it from being soiled in the future, and move on.

I have emotions. I own them. I express them, more often alone or amongst friends, of course, but that’s on a case by case basis, and it isn’t a function of some type of fear of others’ reactions. I’m not afraid to be open and to feel what I feel. There’s no shame in reacting to experiences. I don’t give emotions a score, as if some are more worthy or valid or appropriate than others.

The point is I don’t view emotions as a weakness.

People have to be taught to suppress their feelings, and it’s been my experience that those who learn those lessons too well are generally more prone to being unable to communicate effectively, are often incapable of making healthy social connections, and are plagued by a variety of mental and physical health issues.

They are also more apt to have outbursts way out of proportion to the situation, and expend more energy on a slow burn. Emotions are like the steam in a pressure cooker. If you don’t let them out, they will find a way out in a potentially unhealthy manner.

I’ve found that it’s much better to feel what you feel when you feel it and then carry on. People who do this seem infinitely more trustworthy to me, because I always know where they stand.

I laugh a lot, too, by the way. Mostly, though, I’m just in neutral mode, taking things in, seeing what the world has to offer in terms of life experience. I don’t expect anything from anyone as a result of my laughter or my tears.

My question is, why on earth would it bother you if I express my feelings? What do you think will happen? What are you afraid of?

Maybe you should toughen up.

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