Optical Outcome for Whom?

Autisticzebra recently published a post: We do not outgrow our autism. On the surface that would seem self-evident. Even though we still know relatively little about how the brain actually works, we do currently know that autistic brains are wired and function differently from typically developing brains in a number of significant ways. It’s too soon to say we actually understand what those differences mean, but they do exist. And there are likely other structural differences we have yet to discover. In many ways, neuroscience is still in its early childhood as a field of knowledge. The human brain is enormously and in some ways irreducibly complex. The whole in this case is not merely the sum of the parts.

Given that, it should be self-evident that an autistic person can’t outgrow autism. While the brain is very flexible and can reroute function, adapt to damage, and can learn to operate in different ways, basic structural aspects are not going to change. The problem, of course, is that we have a bifurcated view of autism today. On the one hand, we recognize that it’s neurodevelopmental and tied to the development and structure of the brain. On the other hand, we define and diagnose autism primarily through externally observable behaviors. And behaviors can often be changed. While changing behaviors can alter some of the ways the brain routes and handles signals, it does not change its basic structure.

It’s in that context we have studies such as Ratings of Broader Autism Phenotype and Personality Traits in Optimal Outcomes from Autism Spectrum Disorder. I would argue that ever stating that such individuals have “lost their autism diagnosis” or even as the study states, “no longer meet diagnostic criteria for ASD“, is actually a misrepresentation of the DSM. The diagnostic criteria for ASD all explicitly state that diagnostic behaviors have manifested “currently or by history” and the DSM explicitly requires that the “symptoms” have been present from early childhood. The DSM does recognize on some level the neurodevelopmental nature and lifelong persistence of autism.

With that said, I understand what the researchers are referencing, even if I think there’s a problem in the way it’s phrased. It is certainly possible for at least some of us to alter our behavior to the extent that, to an external observer, we do not recognizably display the visible markers of autism. I know that’s true because I did it. The “optimal outcome” for autistic children represents my personal lived experience.

There are, of course, some differences. There were no diagnostic criteria for autism when I was born. To the limited extent autism was recognized at all, it was considered a very rare, debilitating type of childhood schizophrenia and those so diagnosed were typically institutionalized. Therefore, I never received any “therapy” specifically for autism. I never knew my experience of the world even had a label. I never knew anyone else like me. As a result, the things I did were largely self-directed. I combined a not insignificant, but also not awe-inspiring intellect with a particular interest and focus on people around me to develop my own compensations. But that sounds too dry and clinical while the reality was anything but. I experienced a world of massive unpredictability where people could and did threaten and harm me for reasons I didn’t understand. Fear was therefore certainly a motivating energy. But the primary driver behind it all was a deep understanding that on some basic level I wasn’t like other people. The things I did failed to elicit the sorts of responses I saw between other people. They also recognized I wasn’t like them and responded accordingly.

I felt broken.

I need to let that truth stand by itself. When you peel back the layers, that was my deepest lived experience. And I was driven to hide it. I never felt any less broken, but I didn’t want my brokenness exposed to others. That’s what I’ve been digging toward in counseling. Here’s the way I wrote it to try to articulate it with my therapist.

I didn’t start working on tone, inflection, expressions, body language, and all the rest out of any sort of conscious, logical decision-making process. Rather, I felt like there was something wrong with me and I needed to find a way to fix it. I felt broken. I felt, down to the core of my being but never actually thinking it in words, that the ways “normal” people reacted to me and treated me were justified and caused by my own brokenness. As long as I can remember, other people have not reacted to me as if I were one of them. That’s what fueled the intensity with which I worked to learn how to respond like they did to each other. It’s hard to describe what it’s like to know, and have repeatedly confirmed, that in some way you’re not like any other person you ever encounter. You feel almost like Pinocchio, that you aren’t a real person.

By the time I entered high school, I had largely succeeded, according to some definition of success. I made significant strides along the way, but looking back I would say everything past that point was more incremental than anything else. Even my mother has said she thought I outgrew the issues and problems I had had in childhood.

I think what I did and what is described in the literature as “optimal outcome” is qualitatively different from what most autistic people mean by masking or camouflaging. Rather, it’s pervasive. We never stop doing it, even in most respects when we’re alone, thought the intensity obviously is greater around others. It’s almost, but not quite, automatic. It’s never completely unconscious, but it’s not usually fully conscious either. If you have to actually consciously think about how to react in a social situation, it’s hard, and I would say probably impossible, to do so in a way that doesn’t stand out to others. You have to internalize all your strategies and coping mechanisms. You have to make the part of your brain enforcing them powerful enough to dictate behavior. You have to become the mask.

And, even after internalizing everything, you still aren’t actually like “typically developing” people. That’s one truth evident, at least to me, in the observations from the study linked above. Even to removed observers some distinct differences were apparent. For instance, I’m not sure exactly what’s behind the increased extraversion, but I remember going through that phase throughout my teenage and young adulthood years. My wife recently commented that when she met me and for the first years of our marriage I talked all the time about everything. And she’s right. She first knew me in the tail end of that period. I found a comment in my basic training class “yearbook” type thing where a fellow trainee had commented that I “sure talked a lot”. At some level, perhaps, it’s easier to manage the flow of the conversation when you’re speaking, though also from the same study, we still have a hard time keeping it focused. And in addition to getting sidetracked, we can still “info dump” to some degree.

However, I think the “less reserved, shy, and inhibited” markers for “extraversion” in the study are the most telling. Because it’s not just that I talked a lot. The nature of my “conversation” was also qualitatively different, though I didn’t recognize that fact at the time. If I felt at all comfortable, connected, or even striving to connect with people around me, I had few, if any, filters on my speech. I would share things about my history, experience, and feelings without the normal inhibition that most people feel. I don’t know that I can put my finger on why that was true, but it was. Perhaps I had devoted the part of my brain normally involved in that sort of inhibition almost totally to managing social interaction, both through active performance and by inhibiting behaviors that detracted from it. Perhaps I spoke more out of a need to make connections. Maybe it was both of those and more. But I can see I lacked normal inhibition.

And that wasn’t good at all. It’s not just that I was vulnerable to manipulation and abuse because I couldn’t read the intent of other people toward me, though that’s certainly true. I also gave them all the information they needed to use against me on a silver platter. I gave them facts, history, preferences, inclinations, experiences, and feelings without any real effort on their part. I was already vulnerable and I actively made myself even more vulnerable and exposed.

I can still be talkative and assertive in conversations and social interactions, though that skill has become somewhat less accessible to me over the years. But I began to develop very strong filters on the things I revealed. However, even those filters don’t seem to function the way they do for “typically developing” people. I had to internalize the fact that revealing things that can be turned against me is bad by internalizing that all topics that are later used against me in conflict, abuse, or manipulation must be inhibited. But that process applies to everyone around me, no matter how close they are or how I feel about them. Take a moment to think through the implications, and I believe you’ll see the negative side of that process. Over the long term, I’ve filtered more and more with those who know me and the intense filtering has made it increasingly difficult to form new connections.

The observable differences between OO and TD groups in the study on remaining calm in a tense situation and being relaxed and handling stress well (with the OO group being noticeably worse) also makes perfect sense to anyone who knows how an autistic mind works. No matter how open, agreeable, conscientious and stable we can make ourselves appear, we are always in danger of being overwhelmed, we aren’t relaxed at all, and stress is a constant challenge. And the broader results make sense as well. The OO group was less likely to make conversation just to be polite than the TD group. The OO group had more pragmatic language difficulties than the TD group. They were more likely to get sidetracked in a conversation, lose their original point, and talk too much about some topics. (Sound familiar to anyone?) Unsurprisingly to me, the OO group was more animated and less likely to use a flat or monotone voice than the TD group. They are more animated because they’ve practiced and focused on it more and have internalized a flat of monotone voice as a negative behavior that must be suppressed and avoided. How do I know that? Again, I lived it. And the OO group appeared similar to the TD group on rigidity, though the OO group was more likely to keep doing things the way they were used to doing it even if they knew a better way existed. Again, it makes sense to me. It takes a ton of effort to appear relaxed and flexible when you’re anything but. Why change something that works?

So how does this optimal outcome play out over a lifetime? I can’t tell that anyone has truly studied that question, but I know how it went for me. Initially, I was highly vulnerable and abused or had others take advantage of me multiple times over the course of a decade of life. I had limited ability to establish true lasting connections with others and even when I did I had very limited resources or methods to repair inevitable relational damage. And over time, everything became overwhelming. What specifically was overwhelming me? I have no idea. I’m still working on that question. But I know it became harder and harder just to get through every day. And I internalized that also as something wrong with me (detect a pattern?) and was driven to try to hide it, which didn’t really help at all. Externally, from the perspective of an observer, I checked all the boxes we expect for a “successful” life. And I felt none of it.

And there is one other key difference between the children in the study and myself. While a ton of negative forces may have pushed and driven me, ultimately I decided how to approach and change each aspect of my behavior. I wouldn’t say all the impetus was internal or even fully conscious, nor do I want to overstate my volition, but I did have considerable agency in the choices I made and the self-training I undertook. I can’t imagine what it would be like to have those choices and that training imposed on me externally, especially by the very people on whom I relied for basic survival. As chaotic as my childhood was, that strikes me as even worse.

In order to achieve the state described as an “optimal outcome”, a person has to internalize the belief that at some level their survival depends on hiding their differences and looking like typically developing people. A child is not likely to explicitly or consciously think in those terms, but that’s the level of focus and energy it takes for an autistic person to develop and maintain a near-typical face. For me, I internalized the sense that I was broken and that I had to at all costs hide my brokenness. And any failure reinforced that sense and made it stronger. I internalized the failures and never even really felt the “successes”. And if people didn’t treat me well, it was on some level experienced as no more than I deserved.

My way is almost certainly not the only way it can be internalized, but I don’t see any positive approach that will produce the same result. If you are even somewhat okay with who you are at your deepest levels, you will not ever be able to hide many of your differences from everyone around you almost all the time. And that’s what the “optimal outcome” requires. It’s not masking at will or when circumstance demand. It’s managing and monitoring every behavior and every interaction all the time and never, ever stopping. It’s taking every failure and building it into your internalized system to try to avoid repeating it. And all that has to happen mostly on a semi-conscious or subconscious level like the details of driving a car. If you have to think about it, you won’t be able to do it.

And the whole time, you will still be autistic.

I had shared my own experiences, writing them in advance, with my therapist the previous week. I delved into them a bit more and discussed aspects of the study and my empathy for the children described in it. And that all led to my one tear-filled question:

Optimal outcome for whom?

 

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