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.