Who Am I?

I Am Not Alone

Posted: August 3rd, 2017 | Author: | Filed under: Autism, Personal | 2 Comments »

I created a storify of a twitter thread about a month ago shortly after I wrote it. Aria Sky (Mamautistic) gave me permission to include her tweets in the story since I think our side conversation expands and deepens the point I was making. The thread revolves around this thought from one of my personal journals condensed and expressed in a single sentence.

It’s hard to describe what it’s like to know and have repeatedly confirmed from a very young age that in some way you’re not like any other person you ever encounter. You almost feel like you aren’t a real person.

It’s never been a secret to anyone who has ever known me that my brain doesn’t work the same as most other people’s. It’s certainly been no secret to me. I’ve had tests of all sorts from a young age. Educators found me ‘interesting’ and wanted to understand me better. I had issues with speech and saw a speech therapist for a few months when I was four. I had early issues with inconsolable ‘tantrums’ (which would likely be labeled ‘meltdowns’ today) and saw a therapist for them, again at a young age. But most of the interest adults took in me revolved around my unusual intellectual capabilities. Looking back, I realize it wasn’t just because I tested well or had unusually advanced language capability. The way I learned, processed, and integrated information was different and adults tried all sorts of tests over the years to try to understand why. I didn’t really mind, though I knew what they were doing even when they tried to call it ‘games’ or something similar. I often enjoyed their different approaches to testing. I believe the results always confused them more than anything else. I may explore that aspect more in the future, but let’s say for now that I’m not surprised recent fMRI studies have shown considerably more symmetry in the density of connections in both brain hemispheres of autistic participants than in “typically developing” participants (who tend to have more densely concentrated right brain connections). I’ve also mentioned that people at work have tried to figure out how my brain worked differently for decades. I’ve worked with highly intelligent, technically proficient, very capable people over the years. And even so, I’ve done things again and again that they could not.

Despite all that autism was never on anyone’s radar, probably because of my age and the fact that I was well into adulthood before any real understanding of autism even began to develop, not that we still have much actual understanding of how autistic minds differ. Moreover, despite all that it somehow never occurred to me that my difficulty understanding other people, learning and employing social nuance ‘on the fly’, interpreting intentions and attitudes toward me, and the social isolation, pain, and fear those difficulties instilled were connected to the different way my brain functioned. Specifically, it somehow failed to occur to me that everyone else was perceiving and reacting to social information in a completely different way than I was. I assumed their internal experience was similar to mine. I just thought they were better at handling it. I felt broken or damaged.

I’ve always felt alone in a way that’s difficult to describe to anyone who hasn’t also experienced it.

And that’s perhaps the single most personally vital bit of knowledge I gained when I learned I was autistic. I am not alone. I don’t know that I can describe how that feels or what it means to discover that truth when you are fifty-one years old. I had mostly given up and was simply surviving and pushing through each day by force of will for the sake of the people I loved who depended on me. My twitter thread tried to express at least some of what that has meant to me this past year.

Nor am I the only one who has experienced that deep sense of isolation. The Autistic Zebra wrote about it here. Alex Haagaard published What it means to finally ‘fit’. Their article focused on why identity labels can be so deeply important to some people. It contained this, to me, deeply relevant statement.

You do not know what it means to grow up feeling utterly alone, worthless and unsafe. And so you do not know what it means, after years of feeling like that, to find a space where you do fit.

That’s precisely what it meant to me to discover I was autistic. It doesn’t really matter to me that I’m not personally, directly connected to other autistic people the same way I am with my family or with coworkers or with people in my other social contexts. The ‘autistic‘ label is important to me because it defines a space filled with people who are like me in ways that aren’t true anywhere else. That doesn’t mean I need to somehow surround myself with other autistic people in my day to day life. I’m pretty tough and I’ve handled living in spaces where I don’t completely fit my whole life. Nor do I want to somehow escape non-autistic (or allistic) people. In fact, a number of them, starting with my wife and partner for the past 27 years, are the most important people in the world to me.

But I now have a space where I can ask if anyone else has experienced something or if it’s just me, a question all human beings ask at one point or another, and get an answer different from the one I’ve heard all my life. Until now, the implicit or explicit answer I’ve always received is that it’s just me. Nobody else really experienced the same thing. When I ask other autistic people, though, I tend to receive a chorus of “Me too!” responses. There’s finally that space where I do fit. And that’s the feeling I tried to capture in my thread below.

2 Comments on “I Am Not Alone”

  1. 1 AutistryAndMe said at 12:22 pm on August 7th, 2017:

    I am embarrassed to admit, though I am autistic myself, I once resented the late diagnosed and doubted they were even autistic! After getting to know a few (I actually dislike being around most adult autistics)I realized how narrow minded and unfair I was being. Not all autistics have to spend time in institutions drugged and strapped to a bed as I did to qualify. It IS a spectrum we occupy and, though we have similarities, we are stil individuals, and complex!
    Thanks, Scott.

  2. 2 Scott said at 12:58 pm on August 7th, 2017:

    A combination of circumstances led to an episode where I was involuntary admitted to a mental hospital for a weekend when I was 22. Now that I know I’m autistic, I can see that was likely a factor if not the underlying cause. I’ve worked very, very hard to ensure I never reached a point like that again. To date, while I have not always been doing well, I’ve avoided that extreme. The fact that I function well (by some definition) much of the time should never be taken as evidence that I’m *always* able to function that well. It’s a mistake we can even make in our internalized attitude toward ourselves, so I definitely understand it.

    I don’t actually know any other autistic adults in person, but have now met a number of them online!