Emotions – The View from a Drawbridge

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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The Wisdom of an Old Friend

“Bad things do not have to happen because they have happened.” – Harold George

When I was 18, I transferred to Flagler College in St. Augustine, Florida for my sophomore year in college. Autism was not even on my radar at that point. I just knew that after a life of feeling like I didn’t fit in, I now felt even more out of place. All these people seemed rich, entitled, conservative, and disgustingly sure of themselves. I felt like a message in a bottle, floating in an overly-entitled ocean with no hope of ever being read.

I have never made friends easily, and that proved to be true at Flagler as well. But friends did come along eventually, and I have many memories that I cherish to this very day. I may never have done anything with any of my degrees, but I still maintain that college was a very important and precious part of my life.

One of my dearest friends was Harold George. He was positive and energetic. He was a force of nature. Trying to keep up with him was like chasing after a dust devil in the desert. Normally I’m put off by such energy, but Harold was charming and kind. He added light to my life. Whenever I saw him, I felt a huge sense of relief. Someone cared.

We graduated before the internet age, before cell phones and social media. The only way to keep in touch was through snail mail, really, and how many people did that? Because of this, most of my college friends drifted away over time, and that included Harold. But I thought of him often.

Fast forward 18 years. I was standing in line to see presidential candidate John Kerry give a campaign speech in Jacksonville, Florida. The line was moving very slowly because they hadn’t provided enough metal detectors for the crowd that showed up on that day. I was lost in thought, trying not to go nuts with boredom. And then I heard someone talking, about 10 feet behind me in line. I immediately knew it was Harold. I couldn’t believe it.

It was so wonderful catching up with him after all those years! We exchanged email addresses. This was about 7 years before Facebook was accessible to the general public, so reconnecting was practically a miracle. At the time he told me that in college he had been inspired to be more politically active because of me. I was stunned that I had made that type of impression, or in fact any impression at all, back then. I was quiet, isolated, chronically depressed, and would have sworn I didn’t even cast a shadow.

Over the years, I’ve been increasingly impressed with the man that Harold became. He stayed in St. Augustine, had the job of my dreams, and he made a loving home with his husband. He also slowed down just enough to reveal his more contemplative side. Now that we’re Facebook friends, I have had the pleasure of reading his posts, which show how observant he is about the human condition. He genuinely cares about people and is finally learning to care about himself, too.

I recently asked Harold to do a guest post on this blog, and I’m grateful that he agreed to do so, because what follows has taught me much about Harold that I did not know in our college days. Maybe I wasn’t the only one there whose childhood undermined all confidence. Maybe I wasn’t the only one who had been bullied and raised in chaos. I would have found that comforting. Maybe we unconsciously picked up on that in each other and that’s why we formed a bond.

But I will say this. Harold, you deserve all the good things. I, too, am grateful that you hung in there. Bon Voyage, my friend. Send me a postcard or two along the way.

Without further ado, here’s Harold.

“Bad things do not have to happen because they have happened.” – Harold George

These words wandered through my mind while washing the dishes, one morning a few weeks ago. My husband and I had been chatting about our plans for our dream vacation that we had booked, and how to fill the time until the trip. As most people do, we have done a lot of planning, shopping for items that we need for the trip, and spending a lot of time discussing what we hope to experience on this holiday.

More than a couple of times I joked about not getting sick or having any accidents in the time until we depart for our vacation. Unfortunately, these jokes were part of a deeper issue, my anxiety about not getting to fully enjoy something I had hoped for over many years.

Epiphanies are often experienced in a more noteworthy way than clearing up the breakfast dishes, but that morning it seemed like a kind voice in my head was helping me accept that I may in fact deserve to enjoy this trip, and that it might very well be all I hoped it to be.

“Bad things do not have to happen because they have happened.”

I grew up in a stormy household with multiple cases of addiction, and parents who argued as frequently as most people breathe. My mother had a lot of regret about many things and would often uses phrases like “Of course it was broken, I can’t have anything nice.” I remember the day she discovered that someone had broken her treasured Bone China teapot, and she spoke as if the universe had specifically targeted her with this signal of deserved unhappiness. As the Sondheim song goes “Careful the things you say, Children will listen.”

As someone who adored his mother, I found myself trying to be her cheerleader from a very young age. I think I made some pretty strong decisions for a young person in that context, not realizing perhaps I wasn’t being fair to myself. Kids can be amazing when faced with challenges; never doubt their strength.

Coupling my sort of home life with years of bullying at school, and I found myself struggling for many years to feel good about much of anything. However, I found a way get through it, went to college, had a great job for 35 years, and recently retired.

During the second week of retirement, I remember thinking to myself how irresponsible I felt, not having any task or specific role that might benefit the world at large. Apparently working for 35 years as a public servant leaves you feeling irresponsible when you have some time off.

Was it really alright to enjoy myself doing nothing? Did I really get here, after all this time, to feel so strange about reaping the rewards of work and perseverance? Am I going to disappear now because I have no specific job that defines me, no role that will keep me in the minds of friends, family, and community members? I was experiencing an anxiety that felt too much like something I knew in my early 20s when I had no idea where I was going to go in life. So, these feelings show up again?

“Bad things do not have to happen because they have happened.”

Carrie Fisher, when discussing the challenges of mental health issues, addiction, and growing up in Hollywood, would often mention how some of the same things she dealt with over the years no longer held their power at later stages of life. She would use the phrase “location, location, location”—and this made sense to me.

Time is an amazing storyteller and guide for learning and growing, and most of all, for building faith on the foundation of the strengths you exhibited when you had no idea you were strong. You always have a chance to reframe your personal narrative, and to move above and beyond. It’s not always easy, but you are the driver.

Yesterday we finally received our passports in the mail, and it was very exciting for us. This morning over coffee, I was savoring a quiet moment of feeling good about something I had wanted to do for a long time. It’s about to finally happen.

I found myself thinking about my 12-year-old self, dreaming of traveling to escape that not-so-great time in life. That guy always seemed to have hope and find a way to dream of better days. I felt myself compelled to thank that young kid for hanging in there, for surviving until the tide did turn, as it often does. To that 12-year-old, I say thank you for getting me here to this moment, I am so grateful to you. You can rest now.

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Quirks That Might Mean You’re Autistic

Does any of this sound like you?

Since I’m so newly diagnosed with autism, I’m still kind of feeling my way through the autism terrain. One thing that has been very helpful is participating in many of the autism groups on Facebook. It’s a huge relief to have finally found my tribe. It can be taxing to always be considered the odd/weird/strange one, or the overly sensitive one. Members of these groups can relate, and that has lightened my burden considerably.

Recently, on one of the group pages, someone asked a really interesting question which prompted hundreds of responses. The topic was things that you thought everyone did, but you’ve discovered that they’re actually a quirk of having autism spectrum disorder. Some of the answers were quite fascinating.

Of course, no two people on the spectrum are alike, so I’m not trying to say that every autistic person has every one of the quirks I’m listing below. (I don’t have 37 percent of them myself. And yes, I counted.) But it does shine a light on the many different autistic tendencies.

Please know that I’m not a medical professional, and therefore you shouldn’t use this list as a diagnostic tool. But reading it certainly makes me feel less alone. I hope it will provide comfort to my readers who are, or suspect they may be, on the spectrum. You are not alone.

And by the way, I’ve organized the information into a list that makes sense to me. It doesn’t mean anything in particular. It’s in no way official. And it’s a PDF form because I couldn’t get the list format to load correctly any other way. I also hope this will allow you to download it if you wish.

autism-quirk-list Download

So, does any of this list sound like you? Let me know in the comments below! And if you want to take an unofficial online test, I suggest the Autism Spectrum Quotient. A score of 33-50 means you could be autistic. I got a 40.

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Your Mind Can’t Be Trusted

Who knows what it’s up to?

For most of my life, I could only tell you one hallucination story. When I was a freshman in college, I had a gruesome accident while canoeing. I won’t go into the details, because they are truly disgusting, but suffice it to say that it required a trip to an emergency room, and the pain, even during my subsequent recovery, was excruciating. I went back to my dorm room clutching the bottle of codeine I had been prescribed. I followed the instructions on the label, and then I collapsed into bed.

I have no idea how much time had passed, but I woke up to see that my roommate had put a box fan at the foot of my bed, because it was a very warm day. That was nice of her. I was so out of it that I hadn’t even heard her come in and leave again.

But then I felt this change. You know that feeling you get when you’re being watched? But there was no one in the room but me.

No one but me and the box fan, that is. And suddenly I was absolutely convinced that that fan was coming to get me. It was inching closer and closer, and if I didn’t do something right now, it would chop me to pieces. I screamed.

But it was midday, midweek, and the dorm was deserted. So deserted, in fact, that I began to wonder if my roommate had put the box fan there at all. Maybe the thing showed up on its own. It looked rather angry.

I sat up and scrambled toward the headboard, hoping that I could buy myself a little time before the inevitably gory attack began. To say that I was terrified doesn’t even begin to describe the depth of my emotions at that moment. I broke out in a cold sweat.

And so, we waited, the fan and I. The fan was glaring at me and making a low growling sound as some fans do. I knew that if I touched the floor I’d be a goner, so I was trapped. I was paralyzed with fear.

At some point, I fell asleep again, this time in a fetal position by the headboard. When I woke up, the fan was still there, but I knew it was just a fan. I had a good laugh at myself.

Then I flushed the rest of the codeine down the toilet. I’d rather recover in pain than go through that again. Some things are worse than pain.

When I think about my Day of the Killer Box Fan, one thing stands out for me. I was convinced that that fan was a serious threat. I mean, convinced like I am that the sky is blue. It was a fact, man, as sure as I’m typing here.

The mind can play funny tricks on you.

The reason I thought of this was that I was reading an article on one woman’s experience with postpartum psychosis, which is very rare, but much worse than postpartum depression. She was hallucinating, too. She even thought God was talking to her. The news anchors were talking to her from the television as well. She wound up being institutionalized for 17 days.

That, in turn, made me think about the many delusional people who cross my bridge, punching the air in front of them or shouting at no one. Whatever they are seeing, it’s very real to them. It’s heartbreaking to witness.

And I’ve only just started reading a book called The Reason I Jump, by Naoki Higashida. I read it after watching the documentary of the same name. The author was 13 years old at the time he wrote the book, and since he’s severely autistic and non-vocal, the way he did so was to point at various letters on a large board, and then a transcriber would write it out for him. So he spelled the book out to someone, letter by letter.

I’m only partway through the book, but it seems that people asked him questions about autism, and he answered them, describing what is going on in his mind. It’s as though he popped open his neurodivergent brain and allowed us all to look inside at the inner workings. It’s pretty fascinating.

It is amazing to discover that a non-vocal autistic person could very well be quite lucid deep down, but he can’t bridge the divide of sensory chaos to show the rest of the world that he is, in fact, quite articulate. In one section he says it ticks him off when people assume they should talk baby talk to him. I got stuck on the phrase “ticks me off”. To think that someone who never even looks up at you or interacts in any way, someone who can’t make himself understood, can still get ticked off… that’s profound.

I just remembered one other hallucination I had not too long ago. (I’m extremely sensitive to certain types of prescription medication.) I looked up at the ceiling and I thought I saw a spider. It was spindly, and it was glowing and golden. I pointed it out to a few people who were in the room with me, and they couldn’t see it. I was pretty insistent that it was there. I kept trying to convince them. They told me I was seeing things. I got so frustrated.

And then after they left, I kept looking at the spider, and all of a sudden it turned into a really beautiful, elaborate, gold filigreed glass window. That’s when I realized that they had been right. I was seeing things. So I sat back, relaxed, and watched the gorgeous ever-changing hallucination until I fell asleep.

Wow, the brain is complex. In retrospect, I can’t really say that I’ve had only two hallucinations in my life. For all I know, this is a hallucination. My whole life could be one big hallucination. I’m convinced it’s not, but I was also convinced about the killer box fan and the golden shape-shifting spider at the time. So who knows?

The idea that my brain can conjure up just about anything is wondrous, but also a little scary. I mean, what if the fan had turned into a giant and much-less-attractive spider? Who’s driving this reality of mine? Me or some other… thing? I don’t know. How can any of us be sure? It feels like we’re all at the mercy of these alien creatures that take on the shape of our squiggly grey matter.

I’ll never fully trust my brain again. Who knows what it’s up to? It could decide to go rogue at any moment. If so, brace yourself, because I’ll surely be writing about it.

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Having a Bad Day? Think 536.

Going straight to the fiery pits of hell would have been preferable to living at that time.

Sooner or later we all have a day that we wish we could have skipped. It’s part of life. Don’t let anyone make you feel guilty for feeling sadness, anger, or disappointment. The so-called “negative emotions” are just as valid as the positive ones, and if you squash them down too often, you’ll lose the ability to express them in healthy ways, and you may even become unable to identify those feelings when you’re experiencing them. This could render you incapable of resolving the issue.

I’m not one to tell people that they should let a smile be their umbrella. First of all, it’s condescending and rude, and it discounts what people may be going through. It also sets people up for failure if they’re still working through their feelings. It makes them feel guilty for having a legitimate reaction to a bad situation.

No. Lean into your grief and frustration, I say. That way you can process it, work through it, and move on. It’s never good to let things fester.

There is no point in comparing someone else’s tragedy to your own. Hardships are like gaseous elements. They tend to expand to fill up your personal space. What may not seem like a big deal to you can seem catastrophic to someone else.

People are entitled to their emotions. If you find yourself wanting to say, “You shouldn’t feel like that,” please think twice. It never ends well.

Having said that, though, I will admit that when I feel like I’ve been stuck in Eeyore mode for an uproductively long time, a bit of perspective helps me get through these rough patches. (It’s important that this perspective comes from within, though. If you say something like, “Think of the starving Armenians” to me, you’ll only remind me of my mother, and it won’t make that burnt Thanksgiving turkey any more palatable.)

Perspective can change my attitude. And attitude is everything, if it’s used as a tool in one’s own emotional toolbox. However, the whole attitude concept should never be used as a weapon to wield against someone else when you’re wanting to feel emotionally superior.

Has “snap out of it” or “get over it” ever worked on you? No? Then don’t blurt that out to others.

When I am casting about for a little personal perspective, though, I find the year 536 to be something worth contemplating. Many scientists believe that was the worst year in human history to date, and for very good reason. I’m fairly certain that I wouldn’t have survived it, but I’m grateful that my ancestors managed to. I think going straight to the fiery pits of hell would have been preferable to living in the Northern hemisphere at the time.

Imagine this. It’s early 536, and you’re primarily focused on surviving the winter. You are grateful when the sun breaks through the clouds and bounces off the snow, practically blinding you. Your life expectancy is around 30 years, so you take comfort wherever you can find it. What you don’t know yet is that that will be the last time you will see a patch of blue sky for the next 18 months.

Soon, your whole world will be enveloped in a mysterious fog that seems to thicken with time. The sun, while visible, looks like a dim blue ball, and you cast no shadows, even at high noon. And this goes on day after day, month after month. I can barely get through a Pacific Northwest winter with my sanity intact. I can’t imagine enduring 18 months of it, especially without knowing its cause or if it will ever end.

If you were living in some parts of Europe or Asia at the time, the temperatures dropped around 36 degrees F. China reported snow in August. Crops failed, plunging the world into famine. Starvation is a horrible way to go. To add insult to injury, wars seemed to be breaking out all over the Byzantine Empire.

And while people were struggling to get past these horrors, it happened again 4 years later, causing the temperatures to drop yet again that summer. People must have thought that they were being cursed by God. Given that we’re only now figuring out what caused this catastrophe, it must have seemed like an ominous mystery to those living at the time.

But wait. There’s more. All of this famine and pestilence led to the first significant bubonic plague breaking out in the following year, which killed off about half of the people that were left in the Mediterranean alone, and that hastened the demise of the eastern Roman Empire. The plague seems to have been carried by infected rats, and those rats were on the move because, like the humans, they were desperate to find food. Documents from the time describe millions of people dying, people vomiting blood in the streets, piles of corpses and the persistent stench of death.

We have all seen what our relatively brief pandemic lockdown has done to the country. The disasters of 536-543 destroyed the world economy so profoundly that it did not recover to pre-disaster levels until the year 640. Just imagine that. When you’re only going to live 30 years to begin with, that means many generations suffered without hope for nearly 100 years.

Based on documents from the time, along with tree ring data and ice core samples, historians and scientists now believe that this whole situation started with a gigantic volcanic eruption, probably in Iceland. It threw so much ash into the atmosphere that it caused a volcanic winter that persisted for 18 months. Then there were subsequent eruptions in other locations. All this led to war, famine, pestilence, plague, and a century-long economic disaster.

So, yeah, when I’m seeking perspective, all I have to say to myself is 536. I’m thinking of having that tattooed on my arm in a colorful gothic font. Portable perspective.

Sources:

I Should Be Smiling

I had to tell my face what to do.

On my commute home the other day, I was listening to Q with Tom Power on the radio. I’ve blogged about this show before, but the bottom line is that I highly recommend it. Tom Power is the best interviewer alive.

Sadly, I can’t remember who he was interviewing at the time, but she said something that I felt was really profound. To paraphrase, acting is not making your face look sad. It’s feeling sad and then your face automatically follows suit.

Wait. You mean to tell me that your facial expressions reflect how you’re feeling? Yeah. I know. This probably goes without saying for most of you neurotypicals out there, but for many of us on the autism spectrum, this might not occur to us.

I am capable of having the facial reactions of which we speak, but just as often, I’m so focused on the sensory input coming at me and the chaos that that produces in my head that my face forgets to arrange itself in a way that won’t confuse the masses.

I have finally found a good therapist who understands the autism spectrum, and he has already told me several things that no one else has thought to say to me, because those things come naturally to the average person. Saying “Oh, by the way, one’s face usually reflects one’s mood” would seem as unnecessary to most people as saying, “Oh, by the way, the sky is blue.”

My therapist also told me about a thing called “mirror neurons”. To grossly oversimplify things, when you behave a certain way, certain neurons in your brain fire. And when you observe someone else doing the same thing, those same neurons fire in your head. It’s our way of reading the room.

For example, if you walk into a room and see someone there who is laughing and smiling, your neurons tell you, “That is something you do when you’re happy. So that person is happy.”

This causes you to act accordingly. For example, you most likely don’t feel tense with that person, because they’re not behaving like you do when you’re feeling hostile or aggressive. You’re probably feeling relaxed and happy, and since your face reflects that emotion, you smile, and their mirror neurons tell them that you’re happy.

I know my description probably sounds analytical to the point of being robotic, but that’s the basic process. It is for most people, anyway. Which makes it awfully hard for those of us who never got the memo.

Now, imagine this. I walk into that same room in all my autistic glory. I’m not unhappy, but I’m focused inward. The two happy people in the room look up at my blank expression and their neurons say, “WTF? Unidentified mood entering the room! Alert! Alert!”

I don’t think I have resting b***h face, exactly. I’m often told I look sad. Or bored. Or stoned. And 95 percent of the time, none of those things actually apply.

Since the happy people in the room are trying to sort out the panicked message that their mirror neurons are trying to deliver to them, I am subsequently presented with expressions of confusion at best, or tension at worst. And that, of course, makes me uncomfortable. And so on and so forth.

Welcome to my world. This pretty much happens with every human that I encounter, every single day. It’s not a pleasant feeling.

To a certain extent, I have learned to mask, often by mimicking the expressions the people had the second before they spotted me. I think, “This is a happy occasion and I feel happy so I’m supposed to smile right now.”

And so I smile. Which is actually appropriate, because in truth I’m quite content. But I suspect that my expression probably seems inauthentic to the close observer because I had to put thought into it and somehow, don’t ask me how, that shows.

In essence, I had to tell my face what to do and that doesn’t seem natural to others. And so people start assuming things about me that aren’t true. I can’t be trusted. I’m insincere. I’m constantly unhappy. I don’t like them. And so on and so forth.

I spend the bulk of my life being misunderstood. I grow weary of constantly trying to explain or defend pmyself. Those who care to take the time eventually learn to go by what I say rather than go by what my face says. But I’m sure that it’s hard to fight against those agitated mirror neurons all the time, and so people often lose patience with me.

I get it. Believe me. This is probably why I prefer to write about things rather than talk about them. No facial expressions involved.

So how do I fix my face for this occasion? Mixed emotions present me with a whole new level of complexity. How does one look road-weary yet accepting, wistful yet acquiescent, bemused yet acceding?

I’m probably not the best person to ask.

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Lowering the Autism Mask

Where does my masking end and my authenticity begin? Who am I, really?

Having just recently learned that I have been walking around with autism for decades without even realizing it, I’m spending a lot of time learning about the condition, and reevaluating the events of my past through the autism lens. Things are finally starting to make sense.

A huge element of autism, especially with level one autistics, is something called “masking”. Basically, it’s trying to pass yourself off as neurotypical. We all want to fit in, so I’ve been masking my whole life. I did it by pure instinct, so imagine my shock when I discovered that it was actually a thing.

Without consciously realizing it, I now know that I sometimes mimic facial expressions even though my default position is to keep my face blank. I sometimes force myself to have eye contact, especially at job interviews and the like, even though it inwardly makes me squirm. I do my best to pretend I understand certain types of jokes. I try not to fidget or hum too loudly.

I know it’s probably best to keep my weird thoughts to myself, but I struggle with keeping any thoughts to myself, if I’m perfectly frank. I try to fake interest in things that I couldn’t care less about, and I try to dial back my fascination with things I’m obsessed with, because they bore people. I try to have my meltdowns and my shutdowns alone, because otherwise people will think I’m unhinged.

Going through life having to constantly second guess myself and anticipate what will be expected of me in upcoming situations is exhausting. It sucks the life force right out of me. Because of this, I tend to avoid people. I think if I could just be myself without being judged, if I could be 100 percent certain that I’d be accepted for who I really am and that I wouldn’t freak people out, I might learn to completely do away with the mask, and I wouldn’t be so averse to people’s company.

“Just be yourself,” you’re probably thinking. “Who cares what anyone else thinks?”

That’s easy for you to say. If you’re not autistic, you can’t possibly understand the daily microaggressions we are faced with. We mask to survive. We mask to avoid humiliation, irritation, condemnation, hostility, confusion, misunderstandings, and rejection. We mask so as not to offend people with our blunt honesty. We mask because if people call us weird while we’re masked (and they do, constantly), just imagine what they’d be calling us if they really saw us.

This is not just a thing to be snapped out of. Even if we’re not particularly good at it, masking is a coping mechanism that would be hard to give up. That, and the mask is so pretty, and after all these years it feels like a second skin.

I have been allowing myself to unmask, in whole or in part, in certain circumstances, now that I know what I’ve been doing. My dogs don’t care who I am, as long as I feed them and I’m kind. Dear Husband is super supportive, so I’ve been unmasking more and more with him, but a few times I think I’ve moved too fast and I’ve rattled him a bit. Some friends and relatives have been really wonderful about it, others are now uncomfortable around me, and still others have stopped speaking to me entirely. That has been rather informative. I used to actually think I was a good judge of character.

Needless to say, I’m still learning what I can show and do and say, and two whom. I’ve been at this for 58 years, so it’ll take a minute or two to get adjusted. A lot of times I just do it without thinking about it. I never meant to be disingenuous. The change will not be effortless.

Being born at a time when very little was known about autism was just the luck of the draw. And now there is such a huge bubble of newly diagnosed adults that the support system we desperately need in order to adjust is rather thin on the ground. But I am lucky in that in this modern world, we have more ways to find our tribe than we ever had before.

For example, this blog has allowed me to virtually meet a lot of amazing people. The comments they leave are often profound and inspiring. Sometimes they result in a blog post like this one. They have quite regularly caused me to increase my self-awareness by leaps and bounds. I will always be grateful for that.

Lyn, a long-time reader and my most prolific commenter, had me thinking about masking in a whole new light the other day. One phrase in particular, “hiding behind the illusion of faux acceptance,” really made me think. If people are accepting the masked me, am I really being accepted? Where does my masking end and my authenticity begin? Who am I, really?

I’m a work in progress, that’s who. And for now, that’ll have to do. Hopefully my favorite people will still be with me when the dust settles. Time will tell.

I’ll leave you with more of Lyn’s comment, below. I think she’s an excellent and profound writer! She’s also a huge comfort. Thanks, Lyn!

“You’re discovering that the you behind the mask has many unhealed wounds that the mask hid, not just from the world, but from yourself. You’re slowly letting go of that mask and realizing that fully accepting yourself means risking rejection from some, as you remake, repair and reshape yourself. 

“It’s scary to endure those little deaths after decades of hiding behind the illusion of faux acceptance. Take comfort, as you embrace your authentic self, that no matter how much changes, you’ve always known your name and now there will be others who do also. Unmasking is stressful, but its end result is a freedom only you can give yourself. 

“I’ve known your name all along. You haven’t been twisting in the wind alone. Some of us have been by your side, having recognized a kindred spirit, and are here to support you as you heal and grow.”

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We Are Animals

Many of us mean well. Some of us really do try to do the right thing. But…

Many of us assume that we humans are superior to other animals on the planet. No one actively promoted this belief to me. Maybe I picked it up by osmosis as a child. I think it’s a common attitude held by many religions, so perhaps I got it there. But I have to confess that my gut reaction is to not lump humanity in with other creatures.

I think that some people would even take exception to the fact that I’m calling humans animals. They’d find it insulting. In fact, there are several definitions of the word, and upon close inspection, they seem rather contradictory.

animal 
ˈanɪm(ə)l 
noun 
1.	a living organism that feeds on organic matter, typically having specialized sense organs and nervous system and able to respond rapidly to stimuli. 
2.	an animal as opposed to a human being. 
3.	a mammal, as opposed to a bird, reptile, fish, or insect. 
4.	a person without human attributes or civilizing influences, especially someone who is very cruel, violent, or repulsive. 
5.	a particular type of person or thing.

While a different attitude may not come naturally to me, the more I see what people are capable of, the more I realize that this sense of superiority so many of us hold is absurd. On the whole, we are the most destructive, selfish, cruel and greedy creatures on earth. If anything, we have a lot to learn from the natural world.

In many ways, non-human animals are superior. They don’t tend to destroy their environments. They don’t usually wage war or commit murder. Their worst lies are along the lines of, “I didn’t destroy the couch cushions! Really! It was the cat!”

The more we study other animals, the more we find that they can and do help one another, even if they’re not of the same species. Many are loyal and loving. They like to play. Predators may seem cruel on nature programs when they’re hunting, but there’s no evil intent there.

Those animals that we deem to be a nuisance have only been made so because we’ve taken away their natural habitat and have forced them to survive in our unnatural one. Is it any surprise that these circumstances have brought out the worst in them? Whose fault is that?

We have so many more choices and opportunities than other animals do. We could be a force for good. It’s shameful that so many of us choose to behave badly. I’m not saying that all humans suck 100% of the time. Many of us mean well. Some of us really do try to do the right thing. But it’s those baser tendencies that we all seem to have to resist in order to be good that have me increasingly worried about our future.

If you want to see the very worst of humanity, hop on over to Reddit, to the PublicFreakout subreddit. On that page you’ll find footage of people freaking out on planes and getting kicked off, Karens throwing fits because they aren’t getting special treatment, bigoted individuals showing their true colors, people who feel wronged seeking revenge instead of justice, students attacking teachers, customers attacking restaurant staff, people overreacting because they have to wait, road rage, police brutality, intimidation, assault, theft, and all manner of political outrages.

Really, it’s appalling. I know it’s a frustrating world out there, but violence, cruelty, selfishness, and dominance are not the answers. Poor choices are not working for us as a species. It feels like we are devolving, and there are so many of us that that is a scary prospect, indeed.

Now, if you’ll excuse me, I’m going to go hug my dog.

The ultimate form of recycling: Buy my book, read it, and then donate it to your local public library or your neighborhood little free library! http://amzn.to/2mlPVh5

The Things We Do to Fit In

Assimilation may be the social norm, but it’s a value judgment.

As a young teen, I was actively engaged in an attempt to be liked by my peers. That’s not unusual for that age group, of course. But I wish I had known, back then, just how much the cards were stacked against me.

I’m on the autism spectrum, and I only discovered that about 2 weeks before my 58^th birthday. I wonder what I would be like now if I had learned how to embrace, accept, and understand my differences then. Instead, here I am at 58, feeling like a baby giraffe just learning how to walk.

But in the late 70’s, early 80’s, most people knew very little about autism, so, like the countless number of undiagnosed people in my generation, I fell through the cracks. I got to walk through life knowing I was different, but not understanding how those differences wove themselves through every fiber of my being. I actually thought I was doing a passable job of faking it (whatever I thought “it” was), but now I realize that I wasn’t even coming close.

Without ever telling me, my family went to great lengths to push me toward “normalcy”. My mother wanted the best for me, of course, but that meant forcing me into social situations that felt like torture to me. Brownies. Dance Classes. Job Corps. I always wondered why everyone around me seemed to be able to thrive in those situations to some degree or another, while I found it impossible. I was never able to assimilate.

My mother meant well, but had I known of my autism, maybe I wouldn’t have tried so hard, and maybe others would have cut me some slack. Assimilation may be the social norm, but it’s a value judgment. There are countless ways not only to survive, but also to thrive. Maybe understanding my unique boundaries would have allowed me to live my life to its fullest without trying to force myself into realms that were as unnatural and as unwelcoming to me as the surface of Mars.

I’m not saying we shouldn’t work toward self-improvement whenever possible. We all have our strengths and weaknesses. Many weaknesses can be strengthened. But if a particular weakness is insurmountable, if it’s neurological and therefore can’t be “fixed”, wouldn’t it be better to focus on the strengths? Instead, I kept trying and failing to go with the social flow, and that had a disastrous affect on my self-esteem.

No sane person would even consider pushing someone out an airlock on the red planet. Preferring a breathable atmosphere doesn’t mean you’re a quitter, or you aren’t trying hard enough. It means you know what you need better than anyone else does. It would have been nice if, like water, I had been trusted to find my own level. Instead, to this very day, I’m constantly getting sloshed around by others. It’s as if adding bubbles will somehow cause me to have a bubbly personality.

Erm… no.

I was thinking about my clueless teenaged self just the other day, and I remembered something that’s either kind of funny or rather telling, depending on how you look at it. It’s just one example of the lengths I went through to try to fit in. As was often the case, this effort isolated me even more.

Somehow, I got it into my head that if only I could get as tan as my Florida peers, they’d accept me. So one summer I vowed that I would work on my tan and be gorgeously bronzed come September. Then surely my life would be transformed.

So, I spent the hottest part of that year fruitlessly crashing up against yet another one of my boundaries. You see, I come from a long line of pale-skinned Scandinavians. I am absolutely incapable of tanning. It’s just not in me. At best, I can burn and peel and wind up just as translucently white as I had been before. I couldn’t care less about it now, but when I was 15, I saw that quality as a profound flaw.

I put a lot of thought into how I was going to achieve this swarthy metamorphosis. Maybe if I spent 3 hours a week tanning, and rolled over frequently like a steak that was lovingly tended on a bar-b-cue grill, I wouldn’t burn. Instead, after doing this all summer long, I’d wind up looking like a caramel-colored confection that no one would be able to resist. The boys would love me. The girls would want to be seen with me.

But if I was going to do this thing, there was no point in being bored silly in the process. So, I always carefully timed my tanning sessions with the weekly broadcast of American Top 40 with Casey Kasem. If I positioned the broken antenna on my transistor radio just right, I could enjoy the music as well as Casey’s fascinating anecdotes, and I would be sure to flip over on my beach towel after every three songs. Easy peasy.

Two weeks before school was to start again, even though I had tackled the tanning with the dedication of a lioness defending her young, I looked in the mirror and realized that I had made no progress whatsoever. I was white, white, white. So very white. I was still me.

So, two days before school started, in an act of sheer desperation, I slathered myself with Coppertone QT (the QT stands for “quick tanning”.). The instructions assured me that I wouldn’t even have to sit in the sun, although it was recommended for best results.

To be honest, I’ve never enjoyed the sun. It had been a long, tedious, sweaty summer. I’d much rather be in the shade. So I sat there, in the dark, slathered in Coppertone and wondering why I hadn’t thought of this before. I’m pretty sure I fell asleep.

Four hours later, I looked in the mirror…

…and I was orange. Oompa Loompa orange. (Trump was not even on most people’s radar at the time, so that comparison wouldn’t have occurred to me.)

I let out a horrified shriek and I leaped into the shower. I scrubbed and scrubbed and scrubbed, and nothing came off. And unfortunately, I hadn’t applied the Coppertone evenly, so I had splotches of different shades of orange all over my body. I was mottled and mortified.

By the next day, it started peeling off in patches, but the rest stubbornly hung in there, which made me look like I had been rolling around in mud. Isn’t it every girl’s dream to show up on the first day of school looking like Pig Pen? This would definitely not get me in with the in crowd.

I begged my mother not to make me go to school. But she would have none of it. I had been driving her nuts all summer. She was looking forward to my being kept busy and out of her hair.

From an adult perspective, I get that. But also, from an adult perspective, I can’t imagine sending someone off to the teenage equivalent of a firing squad. There was no way this could end well.

It took a week for the stuff to completely wear off, and I spent that whole time wearing long sleeves and unfashionable scarves in the Florida heat, and trying as hard as I possibly could to render myself invisible. (I’m actually pretty good at that. You’d be surprised.) I got a lot of weird looks and heard laughs behind my back. It didn’t exactly do good things for my Q score.

In retrospect, I can see that I was trying really hard to feel comfortable in my own skin. But thanks to my autism, I took that a little too literally. I thought that the best way to achieve that comfort was to make my skin like that of my peers. I went a little overboard. I wish someone had told me that I was just fine exactly as I was. But for some reason, people resist saying that to one another, even if they long to hear it themselves.

I wish I could go back and tell that kid that I like her just the way she is. Orange splotches and all. I’d also tell her that high school is just a hellish weigh station that one must endure on the way to an amazing life.

A message to every struggling teenager out there, especially the neurodiverse ones: Hang in there. It gets better.

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Can We Forge a Healthy Rivalry?

It’s okay to disagree. If the stakes aren’t too high it can even be fun.

Opinion pieces, including editorials, should always be taken with a grain of salt. Yes, I’m aware of the irony here. The bulk of my blog posts are opinion pieces, including this one. But I tend to avoid these types of articles when the source is not, well… me.

We all know what opinions are like, and that everybody has one. But given the current societal stress level, I prefer to read about things as they are, with or without suggestions for ways to improve them, rather than expose myself to rants designed to incite fear and further division. I am trying really hard to pick my battles and resist the extreme edges of my thought bubble these days.

But the other day I was bored. And I knew that a certain opinion piece was bound to infuriate me. Even the headline infuriated me with its obvious bias about illegal immigration. I was actually surprised that it had popped up on my newsfeed, given the algorithm that I’m sure has been created for me based on years of searches. But having nothing better to do, I decided to read on, because it’s good to see how other people view the world, even when you can only take so much foolishness.

This article did not disappoint. It definitely exposed me to an entirely different worldview, as did the accompanying comments by readers. It was actually rather horrifying, because the bulk of what these people believe can be easily disproved. And yet they were dedicated (dare I say “evangelical”?) to these theories. It saddened me to see, once again, just how gullible humans can be.

The thing is, they would probably think the same of me. I know darned well I’m biased, but I’d like to think that much of my bias is supported by facts. I’d also like to think that I employ critical thinking more often than not. But I’m probably biased about that as well. Aren’t we all?

One comment that the immigration article prompted, though, actually made my blood run cold, especially since so many people liked and responded to it. One woman actually said, “The border is open because the Democrats enjoy drug and child trafficking.”

C’mon. Seriously? Do you honestly believe that the average human, regardless of their politics, would be encouraging drug and child trafficking? Then you live in a very sheltered and extremely warped world.

Normally, one would assume that this type of comment would be made by some troll who was attempting to rile people up. But you had to read the room. She was preaching to her own special choir. The echo chamber for this article was so loud that very few people, including me, even bothered to try to express an opposing viewpoint. This was no troll. This was a true believer.

Her mindset rattled me, because I cannot believe that any person can hold such unreasonable thoughts in their head with such obvious enthusiasm. The stench inside her skull must be overwhelming. Either that, or she has completely lost her grip on reality, and is taking her cohort with her.

Here’s the thing. I’m not ashamed to say that I despise everything about the Republican philosophy. But there are people in my life that I know believe in that philosophy in whole or in part, and I know that at heart they’re genuinely good people, even if I think they’re disastrously misinformed on certain topics. We just avoid talking about politics or religion, and we get along just fine. It’s really not hard to maintain relationships with people when there is a mutual respect for boundaries.

I used to try to change people’s minds, but I’m coming to realize that that’s quite often impossible. I’m also getting a much better understanding of my own limits and energy levels, and the older I get, the more I see that life is way too short for many of these debates. Preserving my mental health is a much higher priority for me.

Could I be friends with a politician or activist who is dedicated to pushing the Republican agenda? Absolutely not. But most of us are not at that level of commitment, and I think influencing friends and coworkers through example has much more impact than any shouting match ever could. And so I live and let live, or at least I try to.

Yes, I attend the occasional protest. Yes, I make my views quite clear on this blog. And because I’m autistic, if someone asks me for an opinion, I’ll definitely give them one. But mostly, I’m just putting one foot in front of the other like most people are.

We don’t all have to agree. In fact, that is an insurmountable goal which I’m not willing to try to reach. The price is too high to pay.

For the most part, I agree with Anne Frank, though. “In spite of everything, I still believe that people are really good at heart.”

And, in spite of everything, I also believe that most people agree with that statement. It’s just that we have all been actively pushed toward polarization in recent years, and in this anonymous internet age, it’s very easy to express our extremes without challenges or consequences. But I don’t think it has to be this way.

I know some sports fans who get extremely polarized while watching a game, but the next day they can be cordial with someone who rooted for the opposing team. It’s called rivalry, not war. It doesn’t have to escalate to DEFCON 1.

I hope that someday we can all remember that it’s okay to disagree. If the stakes aren’t too high it can even be fun. It’s also okay to compromise. Because this place we find ourselves in right now as a society is untenable and increasingly unpalatable.

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