What happens when we try to communicate, but our benevolent intent is lost in translation? Caught in the bottom of a cast iron mailbox and no one has the key? That’s how my Autism feels a lot of the time. And that hurts.
The thorn in my side. Trying to communicate properly and effectively. Thinking that maybe I’m even starting to “get it” or that I’m doing a good job. You know, making progress. Starting to succeed at something I’ve repeatedly failed at. Is progress possible when your entire life has been a long chain of miscommunicated and misunderstood events and ideas? I think so. Or at least, I thought so. And I will probably think so again. But right now I’m again standing at a fork in the road.
It’s well known that there are differences between how Autism manifests between the male and female sexes. And that one of the hallmarks of female autism is social and communication deficits. Unfortunately, I think what most people don’t understand is the feelings of pain and helplessness that accompany these deficits. Social/Communication deficits are my top autism-related struggle after sensory sensitivity issues. While sensory sensitivity issues cause physical pain and discomfort, my social communication deficits cause a different kind of pain- an aching in my soul, longing to connect, but being misunderstood. It feels similar to heartache, actually.
I find it ironic that we live in a world that aims to be so accepting and inclusive of people’s differences, but then balks at invisible disability. A world that seems to blatantly shout that it’s fine and good if you’re different, but I don’t want to hear about it, and if your disability affects your abilities to interact with me? Then you shouldn’t even be trying to interact. You should be relegated to the sidelines. I’m not kidding here- this is actually, really happening to me right now. Do these people know I’m autistic and that I have pronounced communication deficits? A good portion of them do, yes. Whether or not they actually understand what it means, I have no idea. All I know is for those who do know, those who care and take this into account are the exception. It’s not that I think they are uncaring people, or that they are trying to purposefully be hurtful. It’s more complicated than that. Some have written about my being openly autistic as if it is something that makes them uncomfortable, it is “too much information”, or it is some deeply personal thing, such as a serious mental illness- that is a taboo to share. Or, if I’m autistic, then I shouldn’t be communicating or talking at all, is their stance. I should always have someone else talking for me. I should not have a voice because they don’t like my voice. It rubs them the wrong way.
That’s easier said than done in the world we live in. A world that highly prizes and rewards those who are extroverted, socially effervescent and charming to the hilt. People who can communicate with ease, with flair, and with grace. People who are pretty much the total opposite of me. I’m very introverted, and “charming” has never been a word associated with me. I don’t know if this is because of my autism or not. I just know that I’ve always been that way, and every time I’ve taken the Meyers-Briggs? I’ve been a solid INFJ. Introverted/Intuitive/Feeling/Judging is what that stands for. Famous INFJ’s are said to include Mohandas Gandhi, Eleanor Roosevelt, Emily Bronte, Carl Jung, Fyodor Dostoevsky, Florence Nightingale, among others. Apparently, a strong sense of social justice is inherent. Is there a link between this personality type and autistic traits? Sometimes it seems possible. “INFJs are guided by a deeply considered set of personal values. They are intensely idealistic, and can clearly imagine a happier and more perfect future. They can become discouraged by the harsh realities of the present, but they are typically motivated and persistent in taking positive action nonetheless. The INFJ feels an intrinsic drive to do what they can to make the world a better place.” <— Sounds like a lot of Autistic people I know! <3
Are autistic people always introverted? I don’t think so. To be honest I am not sure where a lot of so-called personality traits stop and start in relation to my being an introvert, being Autistic, and having ADHD. I have a friend with Aspergers who is far more social and outgoing than I am. She seems to enjoy online posting and interaction, and reaches out into the world in a way that I could never see myself feeling comfortable or capable of doing. A lot of extroverted Autistic people seem to be those more inclined to be activists, and to be comfortable with and even proficient with- social media and/or public speaking.
This is easier said than done given my circumstances. I have part time help with emails and customer service for my work (so that my communication deficits don’t negatively impact these really crucial communications), but other than that, I have very minimal supports. I don’t have a husband or partner who could take up my slack. I have friends around the country, many of whom I’ve known since high school- but I don’t have what I call “daily friendships” or “let’s meet for coffee friendships”. I don’t have someone I can completely hand the reins to, while I stay in my proper autistic place, with my mouth shut, never rising above my station. Because that’s what it’s about, isn’t it? A game of, “if you can’t communicate exactly how I like, then I deem you unacceptable”? This may not be how it actually is, but it is how it feels.
This challenge couldn’t be more great in relation to my work. I’m one of the very small percentage of Autistic adults who is employed. Most are not. Most struggle with it- having long periods of unemployment spotted with short attempts to be part of the workforce, or do their own thing. Because of this, the majority of autistic adults have to rely on the support of others. This is a source of anxiety and depression. The suicide rates in Autistic adults are the highest of any group. Here’s just one example of many: “Co-author and ARC Director Dr. Simon Baron-Cohen said, “Adults with Asperger’s syndrome often suffer with secondary depression due to social isolation, loneliness, social exclusion, lack of community services, underachievement, and unemployment.”
I’m currently feeling significantly beaten down and misunderstood. For you see, my best attempts to communicate are frequently met with criticism or harsh words written about me. Why do I have access to being able to see criticism written about me? Because my work is an online business, where customer-owner interaction is necessary and important. I’m expected to interact personally with customers on Facebook or social media. To not interact is seen as cold and distant. In trying to avoid social media, I found out I was perceived that way. So I started trying to reach out and connect, posting on Facebook to ask customers for their opinions on things, involve them in polls and feedback threads to show them I valued their opinions, and was eager to meet their needs. Sounds great right? Except it isn’t. It’s backfired. Again.
People don’t like how I communicate. My trying to be friendly, helpful and interact? It “rubs people the wrong way”. I feel at a great loss when even my best attempts to be “normal” are met with criticism, and people putting me down as if some disruptive character flaw is present. This causes me to feel a deep sort of psychic pain. Having it happen once or twice, I could handle that alright. But this is constant. It’s happened my entire life. It’s a bit easier now that I have an autism diagnosis which helps me to understand and put my differences into perspective. But it still hurts. I am “autistically out” in relation to my business because for me it’s important to be myself, and hopefully raise the standard for awareness and acceptance of the gifts/challenges that adult female Autistics face. I think the world would be a better place for Autistic people if neurotypical people could stop and reframe their perspective in relation to autistic people.
What do I mean by “reframe their perspective in relation to autistic people”? What I mean is for them to halt their thought process, which is undoubtedly careening towards critical thoughts about the autistic person’s presentation and attempts to communicate. From what I’ve been told and from what I’ve read, customers on my Facebook page are “rubbed the wrong way” by when I’ve posted polls or discussion threads asking for customer feedback about certain things. They feel I shouldn’t ask for customer opinion, I guess. Or they are fine with my asking, but they don’t like how I communicate. Insert me between that rock and that hard place, because I’m not asking customers to share their preferences because I’m an uncaring jerk. Or because I’m clueless and helpless and am trying to stir up drama. I ask customers to share their viewpoints and opinions because… I ACTUALLY CARE. I really, truly, beyond a shadow of a doubt want to provide products and services that match the needs/wants to the customer majority.
Personally, as an autistic person operating on a different neurological framework, I don’t see being autistically out any different than you voicing your preference for Apple or Android. Being autistically out doesn’t mean I want special treatment or sympathy. I simply want my differences to be viewed as being different- NOT LESS. You can criticize how I interact, but due to the fact that I am autistic and this presents in me as profound social and communication deficits, you are never going to get me to act like another company owner, who engages in a carefree, natural, spirited and flawless way. I’m not capable of it. That doesn’t mean that I am a bad person, or that my business is not worthy- although ultimately it is you who decides who you wish to spend your money with. And I understand that, I really do. What it really means that I am different. It means that social interaction is not one of my strengths, but if you look closely, you might see that I have strengths and unique gifts that another person does not. But if you’re too narrowly focused on the fact that I’m not an ebullient portrait of social appropriateness whose words flow onto Facebook like ambrosia from Mount Olympus? Then sadly, you will not see my strengths or my talents. You won’t see that I have something to offer, also.
My personal experience, my current quandary:
It’s very difficult for me, as an Autistic person trying to operate a small business in the indie makeup community. A dominant part of the attraction for customers purchasing indie makeup is that they get to interact with the company owners. They want to interact, for this represents a personalized aspect of shopping, and the rewarding feeling of supporting a small business with a real person attached to it- not a faceless or nameless corporate conglomerate. A determining factor in the online success of an indie cosmetic company is the online presence of the owner. Because I have difficulty communicating, I’ve had to at times, completely remove myself from the online equation- working only in the background. The result of this approach? The perception that my company is lacking an online presence and personality. That my company is cold and removed, or not friendly. That I am not personally involved, or “only in it for the money”. Obviously this approach does not work without the context of what is expected from an online indie makeup company. So, despite the challenge and stress that socially interacting causes, it is decided that it is really best that I try to “put myself back out there”. I do, and think I’m doing really well. Customers seem to really like interacting, and a lot of people comment on the posts I make on Facebook asking for their opinions. At least that’s what I think.
Turns out, as I describe above- my best attempts to communicate and interact are failures. If I don’t communicate, my company is cold and distant. If I do communicate, my very presence and interaction rubs people the wrong way. And I don’t mean just a casual feeling- I mean, my interaction rubs people so much the wrong way that they unfollow my page, or decide they don’t feel that they want to support my company. Then they go to online forums and write harsh and critical things about me- even despite knowing that I am autistic. My crime? Asking customers for their opinion too often. Asking customers how they feel about certain sales, or product sizes, or artwork on jars, or basically- things that I am unsure about and am eager to hear what customers think so that I can work on improving their experience. I do it from the heart, because I really care. And what happens? What happens is what usually happens. People either misinterpret my communications, or they judge them as being different. And different is not good. I’m then made all too painfully aware of the fact that I’m different, and different is not acceptable. Having been put in my place, I return back to my stool in the corner, put on my dunce cap, and face the wall. Apparently, that’s where I belong. At least until I bravely feel like I can again try to conquer this hurdle.
Ever wonder why Autistic adults struggle with depression and anxiety? Now you know just part of why that is. There’s much more, this is just a tiny glance into the frustration, stress and pain. Just imagine how confusing and difficult it is to navigate your life in this way. Constantly trying to fit in, and even thinking that you’re doing a great job- only to be slapped into submission and made to feel like you’re broken, inappropriate and perpetually wrong. That your voice doesn’t fit in. That you need to never come out of the shadows, instead having always, someone to represent you. Because, you know… you’re just not good enough.
And so I return to those shadows, with heavy heart. Like Icarus, I have flown too closely to the sun. I’ve been in a place I was never meant to be. The harsh light of the sun has melted the wax of my wings, my feathers disintegrating into a useless whirl of fluff and flutter. Sending me spiraling back down to my depths.
Do you think that’s fair? That the neurotypical world is such a harsh, sharp and cruel place, where Autistic people continually try to convene, but continually feel ostracized and cast out?
If you don’t think that’s fair, then consider learning more about autism and neurodiversity. Nick Walker of Neurocosmopolitanism presents an amazing definition of Autism. Autism awareness is a thing, but what is “awareness” when it is lacking acceptance? You’re the missing link between awareness and acceptance.
I leave you with a poem. One of my favorites from long ago.
From childhood’s hour I have not been
As others were—I have not seen
As others saw—I could not bring
My passions from a common spring—
From the same source I have not taken
My sorrow—I could not awaken
My heart to joy at the same tone—
And all I lov’d—I lov’d alone—
Then—in my childhood—in the dawn
Of a most stormy life—was drawn
From ev’ry depth of good and ill
The mystery which binds me still—
From the torrent, or the fountain—
From the red cliff of the mountain—
From the sun that ’round me roll’d
In its autumn tint of gold—
From the lightning in the sky
As it pass’d me flying by—
From the thunder, and the storm—
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view—