OARacle Newsletter

When asked to write about my autism advocacy experience, many things came to mind. I have penned articles, been interviewed for podcasts, and presented at conferences. It seemed like I was making a difference—but I never knew for sure. Looking over everything I did to spread autism awareness and acceptance, I found one form of advocacy that stood out as the most meaningful and fulfilling, and it is one-on-one interaction.

Before I get into that, a little about me: I am an autistic woman in her early fifties who wasn’t diagnosed until the age of 42. I am a science writer and editor by trade and prefer to get my information from knowledgeable sources. My journey of learning about autism was twofold: part spent reading primary research, which didn’t help much, and the other more useful part spent talking to other autistics. The way I learned from them, one conversation at a time, has shown me that the best way to learn about autism is by talking to an autistic person.

The one-on-one method might seem too incremental to be that important. But I can tell you from my experience as an autistic person that discussing how autism feels with a non-autistic person who is genuinely intrigued is special. A lot can be accomplished in a short period of time with an interested party.

They can stop me whenever they like to ask questions or get a longer explanation about a certain aspect. Many take the opportunity to indulge a specific curiosity. Sometimes they’ll ask me something I’ve never been asked before, and I learn something about myself, too. There’s an in-depth conversation that happens during which we gain a better understanding of each other that is otherwise hard to come by.

From there, that one person will see autistic people in a new light and maybe share with others what they’ve learned from their new autistic friend.

I was reminded of this when having lunch the other day with a new acquaintance. When the subject of my autism came up (I’m very open about it), she admitted that she knew nothing about autism other than the media stereotype of a flailing, non-verbal kid. I chuckled, “Oh, no, my autism was never like that. In fact, no one knew I was autistic, not even me.” At that, her interest was piqued.

I continued, “The media shows autistic people as abnormal on the outside and normal on the inside, but the opposite is true. Many of us can act and speak normally, although we have to expend a lot of effort to do it. But on the inside, we’re very, very different.”

That part of the explanation is the easy part. The hard part is trying to describe that disparity. My internal experience is miles away from a non-autistic person’s. Most assume everyone’s minds work in more or less the same way. The idea that someone’s mind might be drastically different is a big leap. Once I get someone to make that leap, though, I’m 90% of the way there. From there, I can get to the real autistic experience.

Imagine being in a foreign country where you taught yourself the language and some social niceties, but the idioms, the subtext, and the face and body language eluded you. You would be aware of a level of communication going on that you didn’t have access to, but there was no way to learn it. For example, I became convinced in third grade that everyone could read minds except me. My mother assured me they could not.

Even if someone hasn’t experienced that challenge specifically, they can picture it and start to get an idea of what my life is like. The perpetual floundering, that feeling like you’re trapped in a society and language you barely understand, that is what it feels like to be autistic. We get tired easily because we have to concentrate so hard to understand and be understood by others, and we can’t ever drop that level of concentration unless we are alone.

It’s so rewarding when I can get to that point, towards an idea, if not a full understanding, of my experience of autism. But this is only half of what I go through. As much as I prefer one-on-one discussion, it falters here. I can never quite seem to convey to a non-autistic the other half of my experience: the absolute necessity of hiding my autistic self.

After telling my friend how much effort it takes to appear normal, she insisted I didn’t have to hide my autism around her. This happens a lot. It comes from a good place, but to me, it is dispiriting. Here I’ve spent all this time explaining to her how difficult my autism is and how much energy I have to expend to compensate for it, and in response she suggests it’s a mere social convenience that can be dropped, rather than an essential disguise I must maintain, manufactured after years of mistreatment by my peers.

How do I convince her that without that mask, I would be bereft, ostracized, and unemployable? Uncamouflaged autism doesn’t make a person look autistic. It makes them look like a jerk. We come across as rude, abrupt, loud, and self-absorbed.

No matter how hard I insist that revealing my autistic self would result in a drastic and unpleasant change in demeanor, most people aren’t convinced. In one case, a woman refused to believe it wasn’t better to “be true to myself” and nothing I said could change her mind.

In these cases, all I can do is keep emphasizing that my outward manner is as necessary as it is difficult. Because I know that the other person wants to understand and that they’ve been asking questions in order to wrap their heads around this utterly foreign experience. I know that it is important to them to get to know their new autistic friend and try to make her feel safe and accepted.

And between you and me, what more could I ask?

Christine M. Condo [she/her] has been published in The Washington Post, Autism Parenting Magazine, and OAR’s blog. She has been interviewed on radio and in podcasts, and presented at autism conferences in Barcelona and London. Condo writes on Medium.com, and maintains a personal blog about her experiences at thisgreatape.com. She was diagnosed with autism spectrum disorder 1, also known as Asperger’s, in 2015 at the age of 42, after a lifetime of being bullied and ostracized to the point of always having to hide her true self. Her professional writing focuses on dismantling common misconceptions about autism and supporting the burgeoning neurodiversity movement.