We ARE Empathetic... We Just Don't Show Sympathy

There is a myth that autistic people are not empathetic.  It is a common belief within the psychiatric community, such that some people seeking their diagnosis are told they can't be autistic because they display empathy.

It's a dangerous assumption to say that autistic people are not empathetic.  For some people it would lump us in with psychopathy or sociopathy which can occur along with autism but is not a feature of autism or a comorbidity.  And, it can give autistic people an even more negative view of themselves than we already tend to have.

We are empathetic.  Many of us have to avoid watching the news, because we so deeply feel the problems of the world that it can send us into a meltdown or shut down.  For many of us, the issue is that we feel too much.  We feel it all, and it overwhelms us.  We are considerably more sensitive to the feelings of others as well as our own emotions.  It is common for an autistic person to cope with this from an early age by avoiding and locking away this part of themselves as much as possible.  We bury those feelings so deep that we sometimes don't even know what we're feeling, we just know we feel bad.

We feel it truly and deeply when someone is hurting, or struggling.  Much of the time we can sense it before we're even told - as we tend to be able to see the truth of other people even when it is hidden.  We're excellent at spotting liars for that reason.  (but we give everyone the benefit of the doubt anyway)  We genuinely want to help.  What we don't do however, is display sympathy.  We often feel extremely awkward in these situations because any type of social interaction is difficult for us and we each have a history of experiencing rebuttal and rejection for our lack of social skills and it leads us to overthink and question ourselves, especially in more difficult, emotional charged situations.  We end to freeze up and not know what to do, we fear doing or saying the wrong thing because we have done it so many times before.

So while we seem to be sitting there silently, saying nothing about the fact that your loved one just died our that you've fallen ill, we are radiating love and care your way.  We just don't say it aloud. We don't know how.

Those of us who mask, may have better abilities with this because we have been studying what other people do in these situations for so long.  Yet, when we say the words we know we are supposed to say, it feels hollow and empty.  It doesn't feel like enough.  There's a novel worth of words in our hearts, so much we want to say but we have learned that kind of gushing outpour of emotion is rarely welcome. Even if we were to say it, we'd then question if it was too much, not enough, if it is pale in comparison to the emotions, if it sounded patronizing. And that stops us again, from saying it, because we've worked out all the possibilities and we know that if we say the wrong thing we can cause an already hurting person to feel even worse - and because of how empathetic we truly are - that is the absolute last thing we'd ever want to cause.  We absolutely detest the notion of causing or adding to pain.  We know pain.  We feel ours intensely.  We feel yours.  We want to see less of it in the world and its a large part of the reason we struggle to lie or be deceitful, except where we've learned to do it as part of masking.  It's just not true to our hearts.

Now for the irony of all of this - when we see an allistic person expressing sympathy to others, we can tell when it isn't sincere.  When they're going through the motions because they're supposed to, because that's what you do.  On the surface, to everyone else, that person may seem sympathetic or empathetic but we know that they're just saying it...they don't truly feel it.  And that's not in every case, but it is common and I think many people know this about themselves even if they don't admit to it.  It's not to say that a person who sometimes expresses false sympathy is never empathetic, just that it does happen in many people, pretty often.  We autistics struggle to do anything that is "just going through the motions".  It is one of those things that our brains simply cannot fathom.  If we know we don't actually feel that way then it feels like a lie.  And we truly do not like to lie. 

Many autistic people are brimming with empathy, but it seems when allistic people say we don't have empathy what they mean is that we don't display sympathy.  It is a conundrum, when we so easily read a lack of empathy in allistic people.  It's just another way we are misunderstood.

You Could Be Autistic...And Not Know

If you've read my first post, this title shouldn't surprise you.  If you're a person who was clinically diagnosed or self diagnosed late in life, past childhood, this title shouldn't surprise you.  For everyone else, here's why:

I reached middle age before I found out that I might be autistic.  Decades of my life passed, with me having no idea.  And I am not alone.

You could be autistic too.

There are tons of people with late diagnosis of autism.  Typically autism has been seen as occurring specifically in the male population.  So females have been passing under the radar for quite some time.  The thought is that we are better at masking, at mimicking, at blending in to society, so we go unnoticed in our autism.

But, and this is my own speculation, I don't think that females are the only ones good at masking.  I believe there are males that have gone undiagnosed because they also have skill in masking.  It's also possible there are males who grew up in families that simply saw them as difficult children and disciplined or ignored the behaviors.  Many autistic people display a combination and severity level of traits that is not quite as disruptive to everyday life, to education, and can even provide advantages in those areas.  You see, autism isn't screened in everyone.  It's only diagnosed when a child's behavior causes enough disturbance that they are brought to someone who will diagnose them.  In many cases, they can even be misdiagnosed as something else, like ODD or ADHD when it is actually, or also, autism.  So many kids, especially those from poor or abusive homes, will never be diagnosed.  If they're lucky, they'll figure it out as adults but there are large barriers to adult clinical diagnosis as well.  Psychiatrists may not be as well versed in diagnosing autism in anyone other than a male child who doesn't mask.  Everyone else can just wonder what's wrong with them all their lives until they figure it out or.... don't.

So yeah, you might be autistic.  If you've always felt different, have sensory sensitivities, have discomfort or difficulty in social situations especially eye contact and small talk, or you find yourself unable to keep still, frequently doing some sort of repetitive motion, it's worth looking further into it for yourself.

Here are links to some quizzes that can start to shed some light on the question.

This first one gives you a graph!  (Which I am clearly excited about)

https://rdos.net/eng/Aspie-quiz.php

https://exceptionalindividuals.com/candidates/neurodiversity-resources/neurodiversity-quizzes/autism-quiz-test/

https://www.wired.com/2001/12/aqtest/

You Don't Look Autistic

You may have said this yourself.  It may have been said to you.  You may be wondering who the heck says such a thing.

For those of you who haven't run into this statement before, it typically pops up when a person "comes out" as autistic to a friend, family member, coworker, or whomever.  The person to that point never thought of this person as anything "out of the ordinary" and so they respond by saying this infamous sentence.

You don't look autistic.

Many of us are frustrated or angered by this statement.  Rightly so.  It feels dismissive.  It feels like we are disbelieved, or like we aren't autistic enough to receive any consideration for our needs as autistic people.  It feels like a slap in the face when we were trying to share a deep, emotionally centered part of ourselves.  Telling you that we are autistic isn't something we take lightly.  For many of us we have put a lot of time and energy into thinking about and preparing ourselves to tell you this important part of us.  Receiving this response hurts.

But I think that it is incredibly telling.  It says something about society.  About our culture.  It says, loud and clear, that most people have no idea what autism actually is.  I certainly didn't.  The simple misunderstanding that autism has some kind of look feels absurd to those of us who are autistic.  But, being the people we are, we've researched and read up on autism.  We've found communities of other autistic people and reveled in finally feeling home, and understood, and seen.  We finally feel just a little bit less like an alien on this planet.  We have learned as much as we can, as quickly as we can what it means to be autistic, what it feels like.  We have quizzed, we've read stories, we've commiserated, we've celebrated that we are not, in fact, alone.

We have learned that there's not a "way" that autism "looks".  We are a remarkably diverse group.  There's no height, color, weight, hairstyle, face shape, body type, ethnicity, gender or sexuality that defines autism.  We run the gamut.   It's not like the conditions that present with distinct facial features.  That isn't a feature of autism.

So when someone says, "but you don't look autistic" it feels insulting and hurtful.

I want to ask, what do you think autism looks like?  

But instead I'll tell you.

Autism is invisible.  It doesn't look like anything.  And we desperately need the general public to be aware that autism is an invisible condition.  Yes there can be things that we do that hint at it but for those who have become good at masking, an external observer would be hard pressed to identify them as autistic.  Some of those people don't even know themselves..... and I hope they find out soon because I know how they're feeling.  They don't know why they are the way they are.  They don't know why they've been consistently rejected.  They don't know why they just can't do what they're supposed to do, or why they occasionally act ways in public that embarrasses their friends or family or even gets them fired, though none of that is their intention.  They don't know. They think they're bad people.  They're at a high risk for suicide.

I sincerely hope they find out soon.  This is why I feel, of all the types of awareness campaigns that have existed, autism awareness and education of the public is critically important... some of those potential suicides may be prevented, and the anguish and loneliness people feel can be unraveled.

It's a Spectrum, Not a Gradient

People like to say everyone is a little autistic.  This implies that Autism in the population is a gradient.  At one end are people who are least autistic, and at the other end are people who are most autistic.  While this belief is very common, it's false.

There is no such thing as slightly autistic or a little autistic.  There is the possibility that a person can have a few autistic traits without having the distinct neurology that causes autism, like a sensory issue or difficulty maintaining eye contact, but that alone is not sufficient for an autism diagnosis.  Now this further compounded by the issues surrounding masking.  Masking is something that autistic people learn to do early in life and is essentially an autistic person learning to mimic neurotypical people in order to fit in with others and avoid a lot of the negative impact of being so very different.

Masking can make it difficult to assess whether a person is autistic because they've hidden and suppressed their autistic traits for so long that they may not even remember that they had ever had those traits in the first place.  There are many people of all ages who have no idea that they are autistic and masking.  Maybe they're some of the people that say "we're all a little autistic" because they are subconsciously expressing a bit of truth about themselves.  But that is just speculation on my part.

So no.  We are not all a little autistic.  Autism is a divergent way for the brain to develop.  We experience the world and life in a different way than neurotypical people.  Our brain functions differently.  You can't partially have a different neurology.  Either you do, or you don't.

There's lots of resources out there that are probably better at explaining the spectrum than I am.  But I'll give it a shot, and explain it how I see it.  

There are a lot of different traits expressed by autistic people.  We each express some traits but not all of them, and the traits we express are to different degrees.  When talking about color, such as in color theory, there are a few different ways one specific color is identified.  First, it has a hue - that is, the percentages of each of the primary colors that combine to make this specific shade.  Then, it has the percentage of lightness - how light or dark the shade is.  Then, there's the amount of saturation - how rich the color is, where it falls on the range from gray (completely neutral) to the purest expression of that hue.  Autistic traits are similar to this.

Let's say each hue represents an autistic trait.  A person on the spectrum may have each trait to some varying degree of severity, and then there is the degree of how much that trait is visible and the degree of how much it affects us.  Stimming is one trait.  I stim constantly.  I'm rarely still.  But I wouldn't say that it affects my daily life to a significant degree and none of my stims are harmful to myself (with two exceptions that are borderline but I'll discuss those in another post).  No one comments about my stims and, other than some mild embarrassment when I realize I've been bouncing my leg through an entire meeting, it is just part of me and I've not seen it as negative.  Those are the three aspects of that trait - what it is, how much I experience it, and how the experience of it impacts my life.  That, is why autism is a spectrum.   We each are like a color wheel with all these different colors that represent the traits we personally experience and express, how much we experience them or to what severity, and how that affects our lives, creating a beautiful rainbow for each autistic person.  Together we make up all the colors of the rainbow which is an innumerable amount of unique expressions.

I hope that this has clarified what the spectrum is and that no, not everyone is autistic.  If we were all autistic, the world would make a lot more sense to those of us with ASD and we wouldn't feel so alien around the majority of the population.

I Am Autistic

I have arrived at middle age, a lot of years behind me. It's been a long, hard road. I have felt misunderstood, I have felt outcast, I have felt like I was on the outside looking in. I have wondered why I find it so difficult to connect with people and to maintain friendships. Why something as simple as small talk and eye contact is so difficult for me. I've wondered why I feel like an alien. Like, genuinely, from another planet.

I think my experience has been tinted by being an artist. I kind of accepted my being different because I have a creative mind, chalked it up to me being an eccentric artist. It's a common enough stereotype that ... I was mostly satisfied with that.

But it doesn't actually explain my social difficulties or my sensory issues. It doesn't explain why I so enjoyed lining up my toys when I was a kid, or why I would just hit a breaking point and have what I now realize was a meltdown.

I just thought it was me. That I was alone in my unique brand of weirdness. I've known a lot of "weird" people but I didn't even mesh well with most of them.

Years ago, a friend of mine who is autistic looked at me in the middle of our lunch conversation and said "you know, you might be autistic". I brushed it off. I didn't really consider it. At the time, I didn't really know what autism was. Most of my exposure to it, surprise surprise, came from movies, tv, and such. Which, I realize is a terrible resource to learn about something. But I never saw myself in those characters... well... maybe one of them. That would be House. But only a little bit. In retrospect, now that I am more aware of the trope of the Manic Pixie Dream Girl, yeah... I match up with a lot of those characteristics. Right down to how guys I've had relationships with have seen me.

I didn't think that I stimmed. I didn't realize my sensory issues were... well... sensory issues. I always knew I thought differently, my favorite way to explain it was that most people go from A, to B, to C, to D, where my brain seems to go straight from A to D. It just ....takes a different path. I arrive at conclusions much more simply and easily than others do. I just assumed that was a feature of what I was told was a high intelligence.

I thought... I make eye contact. I can interact socially. Sure, eye contact is super uncomfortable and I spend the whole time trying to figure out if I'm doing it right.... but I do it. I can talk to people casually, and force myself into small talk if I feel it's necessary, but again, I spend the entire time hyper aware of every little thing I am doing. I'm monitoring my every gesture, the tone of my voice, my facial expressions, trying to make sure I'm doing it right. And I don't know if this is because it's just always been a part of me, but I guess I never really thought about how easy all of this seems to come to other people. I guess I just thought it was me being me.

But then I watched a TED Talk by a girl who spoke about how she is autistic, like her brother, but went undetected... unlike her brother. He was diagnosed earlier than her. The reason for this is because she adapted and masked her autism from a young age, made it invisible to the outside world. While she appeared to be allistic, the reality inside of her was that she was struggling because she was constantly juggling masking and just trying to live life and accomplish the things we must accomplish.

It put a bug in my ear for a second time. I remembered back to what my friend had said over falafel. Maybe it was worth looking into deeper.

Still, time passed. Nearly a year. I felt like autism was some how too good for me. It was like I thought I didn't deserve it. I discounted the things that made me feel like I could be, I wrote them off as coincidences. But I didn't know enough.

A couple of months ago, on a whim, I started watching more people talking about their autism on YouTube. I heard them say things that I had felt or struggled with my entire life. I suddenly felt seen and understood. These people were describing me. They knew me better than most of the people I have ever known.

I dove deeper, I took quizzes, I joined Facebook groups. I read and learned. And........

Then I self diagnosed.

From tending to want to walk on my tippy toes when I'm barefoot, especially when I was younger to my intense avoidance of eye contact with people I don't know, to the realization of just how much I stim, in how many ways. (Hint: it's a lot.) I started to realize all the autistic traits I carry and what I've struggled with since childhood.

Of course, I still doubt myself. I have imposter syndrome, I've known that for years because it's appeared in other areas of my life and I looked into it. Every day I wonder if I'm actually autistic. And every day, I hear something from someone who is autistic that reaffirms that my self diagnosis is correct.

Even if it isn't, I fit so well into this community that it would genuinely surprise me.

So here I am, two months into the realization that I am autistic, and finding answers and a community that is slowly changing my life.

I'm autistic...and I get it now.