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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I Am Not Alone

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.

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A focused interest in people?

My therapist made an observation last week that I’ve been rolling around in my mind trying to decide what I think about it. I was discussing a question I was asked in another counseling session, “What would it be like for me to let myself just react naturally?” (That’s paraphrased, but it was something similar.) It arose when I was trying to describe just how much I’m constantly processing and monitoring and evaluating every single social interaction, everything said, every expression and other non-verbals, tone, inflection, and every other aspect. I’m trying to understand the other person correctly as I’m also trying to manage everything about my own affect to try to communicate what I actually want to say. Part of that is conscious, but a lot of it is deeply ingrained and semi-automatic. Most of all, it never stops. A portion of my mind is always reviewing past interactions, preparing for future ones, or trying to manage one in which I’m currently engaged. Sometimes, it’s doing all three things at once. In that context, I guess it made sense for someone to ask, why don’t you just react?

And so I tried to explain that I have absolutely no idea what that would even mean, much less how I could I do it. I began training my voice (using tapes I had my mother get for me), practicing expressions in the mirror, and consciously working on body language when I was 8, 9, and 10 years old. I became good enough at it that I was able to more or less interact with others on a level that came close enough to their expectations that they didn’t perceive me as too different and reacted much less negatively. I have continued to work on that process my entire life. I’m 52 years old. I haven’t reacted spontaneously and without thought in a social context since I was 7 years old. I don’t know that I could shut off that part of my brain even if I wanted to do so. And I have even less idea what it would mean if I somehow did.

But I objected to the interpretation that some people make that my reactions and interactions are somehow inauthentic or fake as a result. People take the fact that I consciously or semi-consciously manage social interactions and that I rehearse them in my head as though I am not reacting naturally. I began to point out to my therapist that absolutely everyone wears different “faces” in different contexts. It’s a normal part of being human. And I described how I see it everywhere all the time. I watch expressions and body language. I listen to variations in tone of voice. I can see even small changes when I’m not involved in the interaction and can devote myself to analyzing instead of participating. I’ll see myriad subtle shifts in body language, expression, and affect as a person moves from one context into a different one. Sometimes things will shift when someone new enters an ongoing social interaction. People shift and modify the face they display all the time. They just do it without thinking, so they assume they are being “natural”.

And I described again some of the ways I practiced and learned how to do something similar. It’s never entirely automatic for me, no matter how much I practice. I can easily get thrown off by the unexpected. I’m still learning new unwritten and unspoken social rules every year. And I often do more suggestion and leading in my performance, allowing others to fill in the gaps (a technique I learning from acting) because I have to devote much of my mind to the actual communication itself. (It doesn’t help if I get my expression and body language right, understand their nonverbal attitude and realize I have no clue what they actually just said.) So my faces are typically incomplete, but often just good enough for the given context and setting. While they are never natural and automatic, they are no less authentic than the faces everyone else uses without thinking. In every instance, my faces are a part or aspect of who I am. I am trying to communicate in ways that will be received as I intended them to be heard rather than misunderstood. I am being no more fake than someone trying to speak a second language that doesn’t come easily to them.

My therapist’s reaction was unexpected. Of course, she acknowledged and restated the truth in everything I had described. I am trying to do pretty much exactly what everyone else does automatically and without thought. And the fact that I have to think about it or practice it doesn’t make what I’m doing any less authentic or real. But then she paused for a moment. I’ll have to paraphrase what she said, but I think the following is more or less accurate.

“It’s not uncommon for autistic people to develop a focused interest in something. And when that happens, they tend to learn everything they can about it, in far more depth and more comprehensively than most people do about any subject. And while everything you say about communication and social interaction is true, the thing that stands out to me is that you saw and understood enough about it to begin practicing on your own when you were as young as eight years old. I think instead of trains, which is one of the stereotypical autistic interests, you were interested in people. You’ve described observations about human interaction that many adults never consciously make. You must really study people and you’ve apparently done so your whole life.”

It was one of those moments where everything goes out of focus, shifts, and comes back into focus in a different configuration. Even with everything I had read about autism and “special interests” that possibility had simply never occurred to me. But once it was said, it made perfect sense. And yes, I do study people. I can sit and watch people in public settings for hours without tiring. I closely watch the people I care about and try to understand their unique particular reactions, expressions, and ways of expressing things. I always have mixed results. I remain utterly inept at reading people’s attitudes and intent toward me, and am forced to rely purely on their words and actions. And I still struggle immensely applying even what I do know in real time interactions.

I’ve expressed in other posts that I appreciate my ability to at least approximate expected social responses most of the time. I’m sure the effort exacts a toll on me, but it’s not one I regret. I need that ability in a professional context. I’ve been desperately poor in the past. I appreciate the stability and structure a consistent, reliable income brings. But it also matters to me socially. I like to generally get along with people and have our social life in the community go smoothly. And when it comes to closer relationships, I have so very few people. I desperately want to communicate to them in ways they understand and which accurately conveys how deeply important they are to me. That’s worth however much energy and effort it takes. And I still fear I fail more than I succeed.

Obviously, autistic people who develop passionate and focused interests can and do develop more than one. And those can also change over time. I’ve described elsewhere some of my interests. But I never thought of ‘people’ as one. Yet when I heard my therapist’s words, they rang true. Another person’s perspective can sometimes be revealing. The other can see things about you that are hidden to you. I think this may very well be my oldest, deepest, most focused, and most passionate interest. People do fascinate and intrigue me. And there’s no end to their depth and variation.

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Theory of Mind

Actually, the title of this post is probably a bit of misnomer. I’m not going to discuss theory of mind itself. If you want to dive into such a discussion, I highly recommend this post. But there is an aspect related to the theory of mind discussions that has been niggling at the back of my mind since I discovered them after being diagnosed with ASD last year.

I do lose track of which things I know that my partner also knows.

It shows up most in that, my closest relationship, but I can see traces of it in other settings. As with all things autistic (and I do believe this is related to autism), I’ve learned to cover well. Nevertheless, there have been countless times my wife has told me she didn’t know something I thought she knew. In some cases, I even feel like I remember telling her, but she assures me I never did.

At first, the theory of mind discussions seemed related. But they really aren’t. It’s not as though I’m not aware of the boundary between my mind and the things I know and other minds. If anything, I’m acutely aware of that boundary at all times. Sometimes, it feels more like a chasm than a simple boundary. And yet, I still end up unsure or outright wrong about which information in my mind I’ve actually shared with others. I’ve been searching for an explanation.

This past month, as I’ve had to deal with medical information in a hospital setting with many different people on top of family communication I think the answer finally crystallized in my mind. I’ve noticed the intensity with which I mentally rehearse almost everything I want to communicate, whether it’s comparatively minor or critically important to me. I rehearse everything. I rehearse what I imagine are likely responses to what I will say. I try out different ways of phrasing things and try to understand how each approach will likely be heard. There’s a part of my mind that never, ever stops rehearsing ways to share information. It’s relentless and it’s so much a part of the way my mind works that I don’t even think about it as a process. Obviously, this goes way beyond “scripts” and I think it has a lot to do with my “success” at masking my autistic traits fairly well for much of my adult life.

But I rehearse communication so rigorously that it sometimes feels like I’ve shared something when I actually haven’t. The process of mental rehearsal also forms memories. If the process didn’t it would be useless. But sometimes those memories are hard to distinguish from memories of actually speaking. From time to time, my mind gets confused and I end up believing I have actually spoken words I never said. It’s not that I’m confused about where my mind ends and yours begins. Rather, I incorrectly remember a mentally rehearsed conversation as one that actually occurred.

So I’m left wondering: Does that happen to other people too or is it just me?

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Autism Awareness

A year ago I was still in the process of deciding to pursue an assessment. I don’t recall even being aware myself of various autism “awareness” activities last April or any previous April. I screen a lot of things out, but I also absorb a lot of information. I didn’t have an opinion, positive or negative, about any past efforts. The various awareness efforts were completely off my radar.

I also don’t believe I was unusual in that regard. I had heard some of the autism scare stories. I knew about the vaccine controversy, of course, and how thoroughly it had been debunked. I had seen one or two representations of “Asperger’s” on TV (in dramatized forms that looked nothing at all like me). And … that was about it. I don’t recall noticing anything about an awareness month. I had never heard of Autism $peaks. My online sphere didn’t really intersect with the rich online autistic community.

So I don’t believe the only issue we face is a need for greater acceptance. We do need greater awareness since acceptance rarely flows from ignorance. But we need accurate and informed awareness. Tales of the suffering endured by parents of autistic children aren’t helpful. My attitude as a parent has always been captured by Sidney Poitier’s character’s response to his father in “Guess Who’s Coming to Dinner?” Our kids owe us nothing. We chose to have them. We owe them our best effort to give them a start and a place in this world. And that’s true no matter how hard or difficult it is. That’s the price of real love, especially the unconditional love we should have for our children. And our kids do not owe us for any sacrifices we might have made raising them. As parents, that’s what we were supposed to do.

Of course, if you view anyone as a “burden” that perspective becomes a self-fulfilling prophecy. I refuse to believe that most parents of autistic children fly the martyr flag, just some of the noisiest ones. Unfortunately, the noisy ones keep having their voices amplified.

I also don’t think we need awareness in order to fund the pursuit for a “cure”. Autism is neurodevelopmental. My brain formed along autistic patterns in the womb. I have no non-autistic identity even though I only recently discovered that the way my brain functions has a name. If someone “cured” me of autism, they would effectively wipe me out of existence. Moreover, research is increasingly revealing how deeply intertwined autism is in humanity as a species. Autism develops from complex and varied combinations of genes, at least some of which are also responsible for increased human cognition. In certain combinations and expressions, the dial gets turned farther than it typically does, but autism appears to fall within the range of normal human variation. In order to prevent autism, you would have to alter the broader human genome to exclude autistic combinations and expressions. In order to “cure” autism, you would have to change a person’s genes, the epigenetic expression of their genes, and somehow alter the developed structure of their brain. Thanks, but no thanks.

We do need the broader population to understand the range and variation of autism. We need informed awareness. Awareness does not automatically lead to broader acceptance, but it’s a necessary step. And right now, there is a deficit of informed awareness, at least in the US as a whole. I’m sure there are areas and pockets with greater awareness, but for the most part any awareness that exists is poorly informed.

Of course, it doesn’t help that the most broadly visible autism organization promotes misinformation and uses scare tactics to raise money, most of which goes to nothing useful.  Since much of the awareness that’s currently out there is negative or wrong, we’re operating at a deficit and I don’t see any quick or easy way to change that reality. It looks like a long uphill slog to me. Still, uphill struggles are nothing new to me. That pretty much describes most of my life. And since I can’t change the way my brain works (not that I would be inclined to do so if I could), I’m in it for the long haul.

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Chance Encounters

This weekend my father-in-law was in the hospital again. His memory care facility thought he might have had a stroke. It turned out to be something else, but they kept him to observe his cardiac telemetry and have it reviewed by a cardiologist. Decades of work have trained my system so I tend to wake early and function best in the morning, so I tend to take that part of the load for my wife. Since that’s also when doctors often make their rounds, I tend to handle a lot of the interaction with them as well. While being ‘on’ and interacting with strangers is draining for me, hospitals are a setting where hyperfocus and alexithymia function as a clear advantage. I also never get ‘bored’ the way people describe it, so I’m able to take the long stretches of tedium mixed with bursts of activity in stride. It can be a challenge for me to make sure I ask all the questions that need to be asked and remember all the verbal information that’s shared, but somehow that’s always been easier for me when it’s about someone else than it is when it’s for myself.

Draining as the hospital experiences are, I’m often better equipped to handle lengthy periods in that setting than my wife. I have less emotional involvement when it’s her father, but even when it’s my father in the hospital, I’m able to set that aside and deal with the emotions later. I can even do that to a degree when I need to focus and process when it’s been my wife in the hospital. I never had a name for it until I was diagnosed and discovered a high percentage of autistic people are also alexithymic. I think I can see now why people are always asking how you feel in those situations. For most people, the emotions overwhelm everything else. It’s not that I don’t have emotions and often quite a swirling mess of them. In fact, if I allowed my emotions free reign, they would likely overwhelm me too. It’s more that it takes real effort for me to perceive those emotions as anything more than an undifferentiated tangle of energy. And I can turn that focused effort toward something more productive in the moment and simply use the energy to keep myself moving forward. Identify what needs to be done. Do it. Identify what needs to be done next. Do it. Rinse and repeat until the crisis is over. And when no action is required, wait. I noticed this time in particular, though, that my redirected focus apparently does alter my affect and makes those who know me well, like my wife, uncomfortable.

On the last day, my father-in-law had a student nurse working with him as well. And she’s the one who helped take him downstairs with me when he was discharged. Along the way, she asked what I did and I told her I was a programmer. (Although that’s not, strictly speaking, what I do on a daily basis anymore, it will always remain my primary occupational identity. And it’s a lot easier to explain to someone who isn’t technical.) She asked what I did, which is a massive question, especially with my 30+ year history with computers and technology, so I kept it general. She then told me that her 12 year old son really enjoyed the snippets of access to programming he had in school, but there wasn’t a full class focused on it at his age and she wanted to know if I had any recommendations.

Of course, as anyone knows, that’s a huge question and with no idea where her son’s interests were focused, a tough one to answer. Then she added something to the effect that her son was on the autism spectrum, but he was “high functioning”. In the moment, I simply responded, “I am too. I was just diagnosed last year.”

She didn’t skip a beat and went on to explain that programming seemed to really interest him, but she didn’t even know where to look for resources. None of my kids have ever been interested in technology and computers the way I am, so I’ve never had to think in terms of what would help a preteen and young teenager. Nor did I have time to ask many questions. I mentally ran through modern programming options and decided that an autistic kid who had shown enough interest in the topic that his mother was asking strangers for advice would likely want to dive into a real language. At the same time, it would need to be one that was accessible to a beginner and for which there were a lot of tutorials and resources online in multiple formats since I had no idea how he best absorbed information. So I recommended that she search for python tutorials. It’s a language with which you can do just about anything you want and it runs on pretty much any modern platform. Moreover, there are free tutorials and classes available online in written text, interactive formats, and videos. (And probably other formats as well.) It should be possible to find something that fits his learning style.

And then it was time to take my father-in-law back to his facility. Will that brief encounter end up helping the woman and her son, even a little bit? I have no idea. If her son does have an interest in programming, python is a pretty accessible language. Will disclosing that I was autistic  to her help? I hope it does, but again I have no way to know. There’s very little representation of autistic adults out there today. And 51 year old adults, autistic or allistic, are rarely much like they were when they were 12. Experience and age do make a significant difference. I know parents today hear a lot of frightening stuff about autism. Given that, I hope it helps the mother that the random person she approached for advice was also autistic.

I’m not sure if I’m having more chance encounters with autistic children or parents of autistic children since I was diagnosed or if I’m just noticing each encounter now. Were these encounters off my radar before and therefore didn’t stick in my memory? But now each such encounter stands out as significant to me? Or are people disclosing to me now more than they did before? I truly have no idea, but it’s not like I have an autistic sticker on my forehead.  For whatever reason, though, I’m certainly aware of more encounters now.

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Fighting First Impressions

I ran across an academic paper that reviewed research into “thin slice judgments” of autistic people by neurotypical people. (It can also be downloaded and saved as a PDF for those who might prefer to do so.) For those who might not have encountered the term before, thin slice judgments are the ones we make very quickly and with minimal exposure when encountering another person. They represent our ‘gut feeling’ about someone or what we often describe as our ‘first impression’. It’s often an unconscious reaction rather than anything we consider. And the results of these studies were pretty telling. Neurotypical thin slice judgments of autistic people tend to be negative. The studies were constructed differently, but all revealed the same underlying bias.

Specifically, we are viewed as people our allistic peers are less likely to speak to, sit near, or spend time with. We are perceived as more awkward, more unapproachable, less dominant, and less likable. It’s important to recognize that the nature of thin slice judgments is that they are based on extremely minimal input. They are, however, powerful. It’s those very early judgments that determine how likely we are to interact with someone at all or for more than a few seconds. The first study even included different modalities and the only one that didn’t show a difference was when the participants were reading a written transcript.

I very much doubt that’s exactly a surprise to any of my autistic peers. We know we are treated differently. We’re familiar with all the social barriers we face. And for those of us who were late diagnosed, that was true long before we had any idea we were autistic. However, this study illustrates that it’s not as simple as autistic “social deficits” on our part. Thin slice judgments are not based on any actual social interaction. These are the unconscious judgments before any meaningful interaction or even any interaction whatsoever occurs.

As a result, autistic people are constantly fighting an uphill battle against those negative first impressions. Since some of those judgments are whether or not someone will even sit with us or speak to us, it’s an ongoing struggle just to engage with our allistic peers. We’re fighting against their thin slice judgments.

For me, that helps explain why all my work learning social rules, practicing verbal tone and inflection, rehearsing facial expressions, and studying acting has always been insufficient. Thin slice judgments come into play before any of those can be brought to bear. A lot of the time I never even get the chance to employ the varied social skills I’ve developed. It’s not unusual for me to be in a crowded social setting and have nobody speak to me at all. Sometimes I’ll make an effort, with varying degrees of success, to initiate conversations with people. But I can also go a whole evening with nobody in a crowd of strangers or almost strangers ever interacting with me.

I found this paper personally helpful. It’s good to know that it’s not just my imagination. And it’s good to know that it’s based on their judgments rather than anything I’ve actually done or said. But it’s also somewhat discouraging. I’m already at a disadvantage when actively interacting and engaging with the larger neurotypical world. I also have to climb out of a hole dug by their negative first impressions before I can even get to the starting line. And there’s no learned skill or strategy that can alter thin slice judgments. Extended interaction always gives you the chance to overcome and reverse them. But the nature of thin slice judgments is that they have a lot to do with whom people choose to interact in the first place.

I find this search of research helpful. Your mileage may vary, of course.

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Masking vs Speaking a Foreign Language

Masking is a term that is often used within the adult autistic community. There is a clinical aspect to the term, as noted in the diagnostic criteria for autism spectrum disorder.

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

That description is actually pretty important since it captures something that was largely missing before. Although autism is fundamentally neurodevelopmental and thus present even as our brain is formed in utero,  it’s so intertwined that it’s not necessarily obvious to an observer. So the traits associated with autism may not become apparent until, for example, a child goes to school. Similarly, an autistic person is likely to learn strategies to mask autistic traits, especially in the absence of an intellectual disability. A diagnostician who isn’t familiar with ways that autistic traits can be masked might miss them leading to misdiagnosis or no diagnosis.

However, autistic adults don’t typically use masking in a clinical sense. Instead it’s most often a negative term describing a sense of being forced to pretend to be someone you aren’t: a typical or neurotypical person. Sometimes it can almost become a pejorative. And I understand some of that reaction. It can be incredibly draining to try to follow everything going on around you, categorize it properly, find the appropriate script or matching list of social rules, read and interpret tone, expressions, and body language while trying to make sure your own supports the information you are trying to convey. Whew! It’s exhausting just to type everything that goes into “masking” in any social situation, no matter how “simple”.

And it’s never a process that comes naturally for us. While our ability to mask tends to ebb and flow over the years, it seems to revolve around a fairly stable core capacity. At the heights of my energy and capacity, at least according to those close to me, I can present at least in the general vicinity of neurotypical. Other times, sometimes for years, I’ve barely been able to maintain even the most basic facade. But in either circumstance, it has always required effort on my part. In fact, it’s usually when my capacity is most diminished that it requires the most effort. I’m constantly analyzing things around me trying to interpret them and respond appropriately. So yes, I understand the yearning for an opportunity to just let the mask go, at least for a time.

However, that feeling is not unique to autistic people. Everyone wears masks to one degree or another in different settings. Everyone chooses what to hide and what to reveal in any given moment. I’m reminded of Billy Joel’s song, The Stranger.

Well, we all fall in love
But we disregard the danger
Though we share so many secrets
There are some we never tell
Why were you so surprised
That you never saw the stranger
Did you ever let your lover
See the stranger in yourself

Even in our most intimate relationships, we all still tend to adapt to the other and shape our presentation. It’s not even so much that we’re hiding. Often, we want to be understood by the other and put effort into communicating in ways we believe will convey our inner reality. Certainly, some situations like job interviews and work environments require that we conform to expectations, but most interpersonal relationships aren’t like that. As autistic people, I think we’re just much more conscious of doing it. Non-verbal communication and managing how much or how little to display or mask in any given context seems to come naturally and automatically for most neurotypical people, while we have to expend a lot more energy and effort to accomplish much less.

Of course, I do think most autistic people initially learn to mask in response to negative input from those around them. At least, that was certainly one of my initial motivations, even if I never completely thought it through in precisely those terms. We are more likely to be bullied at a young age because we stand out as different and unusual. We are often misunderstood even by those close to us. And so we can start to feel like we always have to hide our true nature or risk being hurt.

But even if that’s one of the forces that drives us to initially learn to mask at a young age, is that really the only thing we’re trying to accomplish? Are we just trying to hide and conform? I don’t think so. I’m not sure that was ever my primary driving force, even at a young age, and I know it hasn’t been the primary motivation for “masking” for most of my life. Instead, I’ve been trying to be understood, at least in my personal relationships. I haven’t been trying to hide my true self as much as I’ve been trying to communicate it in ways those around me can understand. It’s been hit or miss, since I didn’t really even understand myself. An actual diagnosis provides appropriate framing and helps me place things in context and understand myself better, but doesn’t change my underlying motivation.

Seen in that light, “dropping the mask” wouldn’t help me achieve my goals because neurotypical people would largely be at a loss. They generally lack the framework to understand my “natural” presentation. I’ve seen some people argue that the rest of the world should learn how to interact with us on our own terms, but that doesn’t strike me as realistic or practical. Since the scientific understanding of autism has grown and changed dramatically in recent decades and is still evolving, it’s difficult to estimate the percentage of the population (diagnosed and undiagnosed) that is autistic, but for discussion’s sake, let’s say it’s 1% of the population. With that sort of disparity in numbers, we might expect those closest to us to be willing to spend the time and effort to learn how to “read” us correctly, but it’s not something the general population is ever likely to do. So much of the burden lies on us, at least if being understood is our goal. I suppose that isn’t “fair” but it is reality.

Given that, I’m not sure “masking” really provides the best metaphor for what we’re usually trying to do. I’ve been thinking about this since my diagnosis as I’ve read and tried to learn what it means to be autistic. I think a better metaphor is learning a foreign language. We are after all, trying to communicate in ways that we did not naturally absorb as a young child, so it requires deliberate, conscious effort. Because we have to think about it, we’ll sometimes miss nuance, we won’t catch everything if native “speakers” go too fast, and we’ll always have a metaphorical accent. And some of us are better at the foreign language than others. Some of us might even be able to pass a native speakers for periods of time. But we’ll never actually be a native speaker.

In fact, I’m not even sure that learning a foreign language qualifies as a metaphor as much as a straightforward, factual description of what we are actually doing when we learn to “mask”. After all, studies in communication theory tell us that the majority of human communication is non-verbal. While some autistic people might excel at verbal language, none of us naturally acquire the non-verbal portion of social communication. On top of that, our behaviors that are clinically labeled stereotyped, repetitive, or restricted are confusing if not indecipherable to non-autistic (or allistic) people. We effectively “speak” a very different non-verbal language.

Since we’re scattered among the allistic population in every country, that means we’re always living as strangers in a strange land to some degree. And thus the greater weight of the burden to communicate will always fall on us. We can seek greater awareness among the larger population that we are not native “speakers” and champion greater acceptance for all of us, especially those of us who struggle the most learning this non-verbal foreign language. I think those are very worthy goals, especially since non-verbal language skills vary and some of us may always speak a form of pidgin neurotypical non-verbal at best. But I’m not willing to stop trying to learn to speak the language of those around me. I want to make myself understood, at least as much as possible. Is it a struggle at times? Sure. But I’m not inclined to give up now.

If anything, I hope that understanding myself better will help me improve my communication efforts. But I’m not really trying to mask or hide. I’m trying to speak their language, yes, but still speak it as myself.

Posted in Autism | 8 Responses

I Have Autism

My wife and I took our two younger children (20 and 24 years old) on vacation before Christmas. For the plane ride, the two kids sat on either side of their mother so they could both hold her hand during take-off and landing. She’s terrified of flying. I’ve never really minded flying itself; it’s navigating the airport that’s usually my biggest struggle. If anything, I rather enjoy the feeling of the acceleration forces. It’s probably the same reason I’ve always loved roller coasters. I do always want a window seat on the plane and find it somewhat more stressful when I don’t have one, so I took the window seat in the row behind them.

A mother with a young daughter took the two seats next to me. I was a little worried that the little girl might be one of the ones who gets scared or agitated and screams during the flight. That doesn’t especially bother me. I’ve been the person with a screaming child in public plenty of times in the past and there’s definitely not much a parent can do within the confines of a plane. (It’s not like you have the option to take your child outside until they calm down, after all!) But the girl was behind my wife and screaming children (and any other loud, high pitched noises) increase her anxiety.

The little girl turned out to be very self-possessed and a delight during the flight. She mostly paid attention to different things, but would sometimes point them out to me or, if she was holding it, show it to me. She would periodically tell me about something. Her mother apologized for her daughter bothering me, but I told her it was fine and, pointing out my younger two children in the seats in front of us, told her I was very used to it.

During take off, I could see the girl starting to get distressed, but her mother was ready with a soft toy which she clearly found soothing. When the changing pressure began to bother her, her mother pointed out things out the window that engaged her daughter. Later, they played alphabet games.

Part of the way through the flight, I noticed the girl would periodically tell herself something about the destination or some other piece of information while stroking an apparently soft, well-worn cloth bracelet on her wrist. The bracelet said, “I have autism”.

I had never seen a bracelet like that before. I would share a picture, but I couldn’t find a similar example online. The ones I could find looked harsh and uncomfortable or bright and gaudy by comparison. This one looked very comfortable, used soothing colors, but could be clearly read once noticed.

With that bit of information, I had an even greater appreciation for the way the child’s mother worked with the little girl. She had objects the child found soothing. She knew what things would interest and distract her. She played the games the little girl obviously enjoyed. She didn’t try to force compliance, but the end result was a very calm child. I’ve noticed a great many parents of neurotypical children don’t do as much.

I immediately understood the purpose of the bracelet, of course. If her daughter gets separated in a public place, she might have a hard time communicating information to an adult. She might melt down or go mute. Or simply struggle to figure out what she needs to say. I can remember getting “lost” in shopping malls and other public places plenty of times as a young child and how difficult that often was. In fact, now that I know I’m autistic, I wonder if autistic children have a greater tendency to get distracted or focused on something and get accidentally separated from their parents? It certainly happened to me pretty often, and I probably don’t remember all the times it actually happened. It’s something that all young children are prone to, of course, but perhaps we’re more prone to it?

There’s no great insight in this post. The brief chance encounter has just been on my mind. It does serve as a reminder that for all the “autism parents” who publicly bemoan their fate or even do horrible things to their children, there are many parents quietly loving and trying to truly help their autistic children in appropriate ways. I try to stay hopeful that most parents really do want to help their children.

And for all my struggles and the issues with which my parents struggled, I was fortunate that they worked to provide me the resources that actually helped me. They did so without any sort of diagnosis and without any real guidance other than instinct, observation, and trial and error. My family history is … complicated, and I spend more time writing about struggles I had growing up. That’s just the nature of the beast since some of those are things I’m still trying to work through or place in context now. But I have a great deal to be grateful for as well. Things could have easily been so much worse. In fact, as I study both the history and present day reality of autism, I’ve read many stories that are horrifyingly worse than anything I experienced.

I don’t think the girl’s mother was some sort of hero, either, or at least no more a hero than any parent struggling to do their best. I’ve a firm believer in what Sidney Poitier tells his father in “Guess Who’s Coming to Dinner?” and have tried to apply that with my own children. Our children don’t owe us anything. We owe them everything we can do to care for them from the moment they are born. They didn’t ask to be born. We brought them into this world. But I did appreciate that the mother had information about her daughter the parents of those of us who are my age lacked. And I saw how she was using that information to benefit and help her daughter in very specific ways. No parent is ever perfect,  but I found the two of them heart-warming during our brief encounter in an unusual and, I’m sure, stressful situation.

I try to notice and mark the small things in life. They often have more significance than we imagine.

Posted in Autism | 3 Responses

Don’t Get Stung by the Should-Bee!

I have an issue with verbal communication; sometimes my words fail me. I tried to describe the experience of “losing my words” in an earlier post when I first discovered it’s something that happens with other autistic people too. I’m not sure that I conveyed the pain and frustration associated with those experiences, though. After all, words are usually my friends. I can verbally express complex ideas and concepts. I write. Words are one of my primary tools for doing life as well as my friends — until my words abandon me, which is often when I need them the most. Sometimes it’s like my brain freezes and I can’t come up with any words at all. Other times, I have many thoughts, sometimes so many racing so quickly that I can’t “catch” one to speak. Other times, however, I can mentally construct what I want to say, but I can’t get the words out. It’s as though the switch from my brain to my vocal chords and mouth flips off and I can’t flip it back on.

Most of my life that has been not just frustrating, but in many ways frightening. I had no idea I was autistic and I did not know it was something other people experienced. Learning that I’m not alone has helped with that aspect, but does nothing for my own sense of frustration and even pain. I’ve learned over the years to cover and hide my loss of words in many situations, but there are times when it simply can’t be hidden. For example, when your partner is trying to have a serious and deep discussion about something, asks a question, and you can’t speak, there’s no way to hide it.

This week I was trying to describe how that felt to my therapist. I described what seems to happen. Then I launched into a litany of all the ways I excel with words and some of the different things I have done, even very successfully done, with words. Finally I said, “I know I should be capable of responding in those situations!”

My therapist said, “You should be? That’s a very harsh and judgmental thought. Try something for me. Say ‘I wish it was easier for me to speak in all situations.’ Go ahead.”

I did and she asked me how that felt, and if I noticed a difference. And, surprisingly (to me), I did. I hadn’t really noticed, but as I was describing my frustration over losing my words leading up to expressing how I felt it’s something I should be able to do, my chest had gotten tight and my shoulders tense and weighted. As soon as I said, I wish it was easier for me..., my chest felt like it opened up, my shoulders relaxed and I felt like a weight was lifted off me. The difference was dramatic and immediate. I really was surprised at the difference.

My therapist continued, “You’re pretty amazing. You were never diagnosed. You didn’t get any specific therapy for autism to help you. You learned, mostly on your own initiative, how to modulate your tone and inflection, you practiced expressions, you studied acting to learn body language, and you constantly studied interactions between people to learn a complex set of social rules. Most people pick all that up automatically. It doesn’t come naturally for you, but you still managed to learn a lot of it largely on your own starting as a pretty young child. You’ve also overcome some very hard and difficult experiences in your life without breaking. You’ve been with your wife for 28 years. You’ve raised children together. You’re successful in your career. You have friends. There are problems and ongoing challenges, certainly, but don’t lose sight of everything you’ve managed to do. Many people, autistic or not, don’t do as well as you have.”

She went on to explain, “Thoughts that you should be able to do something are typically tied up with shame. When you think that, you are saying there’s something wrong with you and thoughts like that are never helpful. They just weigh you down. Some things are hard for you and it’s okay to acknowledge that fact and wish they were easier than they are. But beating yourself up because it’s hard will just make it worse.”

And she shared with me a little cartoon image she had drawn to use when working with children. It was a drawing of a very angry looking and aggressive bee with the title, “Don’t Get Stung by the Should-Bee!” It may seem like something small, but I found it very helpful. And I’m certain I’ll remember the image of the Should-Bee going forward.

I don’t know if anyone else struggles with those sorts of thoughts, but I needed to write about my experience to better process it. And I decided to share that writing publicly in case someone else might also find it helpful. Stay away from the Should-Bee. He’s a mean one.

Posted in Autism, Personal | 4 Responses
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