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.

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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

Autism Spectrum Disorder as a Diagnosis

There’s been a lot of discussion about whether or not those on the autism spectrum should be included in the DSM or treated as a diagnosable condition. Silent Wave has one of the best and most comprehensive posts on this topic. I’ve been mulling the topic for some time. I think I have something of a contrary perception, but only on certain aspects and approaches. I’m still not sure I can reduce those thoughts into something coherent and understandable, but I decided it was time to at least make the attempt.

First, I do want to be clear. Autism is not a disease and is not communicable, therefore by definition it can’t be any sort of “epidemic” as we often hear bandied about. It’s also true that autism spectrum disorder doesn’t really fit well in Axis I of the DSM, but it also doesn’t fit anywhere else. The DSM doesn’t really have a way to categorize neurodevelopmental differences. ASD is placed in Axis I because it doesn’t fit anywhere else, so that becomes the catch-all Axis. While there may be environmental issues involved with flipping specific genes associated with autism, in this instance those factors are ones impacting sperm and eggs prior to conception and perhaps some environmental factors in early fetal development. By the time we are born, our neurology is already well-developed. And it’s also true that autism, even though it’s uncommon, appears to fall within the normal range of human development and seems to have been pretty consistent within humanity for a very, very long time. From an evolutionary perspective, that long-term consistency is interesting, though I’m not sure any conclusions can be drawn from it. Still, autism is not a disorder you develop after birth and it’s not something that can ever be cured or eliminated. The level of support a person requires can vary and, in certain circumstances where their environment is sufficiently managed and structured and there aren’t any other issues such as intellectual disability, an autistic person may not require any support at certain times in their life. In those circumstances, they would no longer meet the diagnostic criteria for ASD if evaluated, but their neurology would still be autistic.

However, with all that said, I don’t agree that we don’t need  some sort of formal mechanism for identifying and diagnosing autism. And I think that becomes more evident by exploring some of the places where the analogy with the LGBTQIA+ community used in Silent Wave’s post breaks down. I do want to be clear up front that I don’t consider myself a member of any segment of the LGBTQIA+ community. At most, I’m a little gender non-conforming and the way attraction interacts more with emotional intimacy than gender for me is difficult to express, but I’m generally a white, cis, straight male with all the enormous privilege that entails. I say that because I invite criticism and correction should I write anything incorrect or even problematic. I have had numerous family members and friends who are a part of one segment or another in that larger group going back much of my life and I’ve tried to listen and learn from the things they’ve told me. But I recognize the risk in trying to express things you’ve learned from others.

I want to say that it’s not clear to me that the LGBTQIA+ community is really one community at all as much as a collection of communities marginalized by our larger society for their sexual and/or gender identity. It’s my observation that many lesbians and gays reject bisexual identity, the trans community tends to be pushed to the outskirts of the community, asexuality and agender or nonbinary identities are often outright denied, and actual intersex individuals tend to be forgotten. Moreover, it doesn’t appear to surprise anyone in that community when white, gay men throw the rest of them under the bus. Gender identity and sexual or romantic orientation aren’t even really the same thing. I do find it interesting that at least one recent study has found a much higher correlation with autism among the transgender community, but that’s more of a rabbit trail for a separate post than germane to this one.

And while Silent Wave was correct that homosexuality or same sex attraction was removed from the DSM, the implication that the LGBT community no longer was included in it was incorrect. Gender Dysphoria (renamed from Gender Identity Disorder) remains very much a condition classified in the DSM. I won’t pretend that’s not problematic and I’ve read much discussion about it by members of the trans community, but it nevertheless remains the primary existing avenue for medical treatment and other supports. Therefore the analogy really only applies to sexual orientation, not gender identity.

And focusing more narrowly reveals one of the issues with the analogy. Sexual attraction is something that people can work out for themselves. Even when cultures try to suppress it, it tends to overwhelm societal taboos. For many people, it’s such a primary force that even when individuals work to suppress those urges, they tend to drive behavior. It’s not something most people need help identifying. It can be a confusing and difficult process, but it’s a single, if pervasive, aspect of your identity and one that is often a driving force for many people.

The neurological differences associated with the autism spectrum, by contrast, while similar from individual to individual, tend to manifest in variable ways. The autistic aspects of our brains are intertwined with all our thoughts and many of our behaviors. We are sufficiently alike that we can understand each other and commonalities can be noted, but we are also as different from each other as unique individuals can be. Absent an available and detailed diagnosis, I believe we would fall back into the situation that held for most of my life, where we were misdiagnosed or completely unidentified. Actually, that remains more common for autistic adults even today, though awareness is slowly growing.

Many of us also need the help and guidance of a professional with the appropriate experience when we discover something that makes us think we might be autistic. And, at least in my case, it’s not because I needed a “neurotypical” to explain to me how my brain works, though discussing that aspect with a neutral professional post-diagnosis has been helpful. Rather, I did not truly understand how an allistic brain worked or how my mind specifically differed from their minds. Of course, I knew I was different. I had known that my whole life. I had been trying to work out how my brain was different my whole life. My coworkers had been discussing the ways I approached things differently for decades. But nobody ever associated those differences with autism. Autism remains uncommon in the human population and varies enough in expression that it’s not necessarily obvious except in retrospect.

And yes, with the information now available online, there is a lot that can help people make some determination for themselves that they are autistic. But that information only exists because there are plenty of diagnosed adults providing a baseline and publishing their own experiences. Even with that information, I know I never would have truly accepted the idea absent a formal evaluation. Without the input from someone with a substantial background in psychology and neuropsychology who was also experienced testing and diagnosing autistic adults, my mind would have relentlessly deconstructed and attacked the idea. That’s simply how my mind works. And a formal evaluative process requires a potential diagnosis and diagnostic criteria for it.

The above also illustrates another point where the LGB and ASD analogy breaks down. The incidence of something other than normative heterosexual attraction is an order of magnitude greater than that of autism. Autism is both trickier to recognize and identify correctly and much less common. The only other autistic adults I myself know are ones I’ve met online. And even though there is a lot of information available online, it’s largely invisible until or unless something leads you to specifically search for it. And that will always be true. We’re just not a large enough portion of the population to be substantially more visible. And it’s the existence of a diagnosis with specific criteria that creates the patterns that can be found. Without that binding element, it becomes grains of sand lost on the beach of the Internet.

It’s also not true that the mental health and coping issues those of us who are autistic experience just by living are the result of comorbid disorders or conditions rather than a direct result of being autistic. I happen to be the perfect illustration of that truth. The diagnostician who evaluated me specifically tested and evaluated me for the disorders that are most often comorbid with autism as well as a general screening for any of a wide range of disorders. When discussing the results with me, she called me the most “purely autistic” person she had ever evaluated. I am not intellectually disabled. (If anything, I met the criteria for giftedness as a child.)  I do not have ADHD. I do not have OCD. While I have a base level of anxiety, it’s related to 51 years of actual experience of failure interacting with others and probably a heightened amygdala response and does not meet the criteria for an independent anxiety disorder diagnosis. And yet I have struggled and continue to struggle with life. I live in an allistic world and I have to interact with it every single day. I do need specific counseling and help to better manage that interaction and its impact on both myself and those around me.

I’m also not comfortable with an underlying assumption I sense in the desire to be removed from the DSM, that there’s something harmful or wrong about including the autism spectrum in the DSM. The argument that autism lies within the “normal” range of human neurological variation implicitly also argues that everything else in the DSM somehow doesn’t. It seems to flow from a sense that there’s something “wrong” with having a mental health condition. People trained in psychological and neuropsychological testing are the professionals best equipped, at least as things currently stand, to diagnose autism. Their manual is the DSM, so it’s the appropriate place for the diagnostic criteria. And people with other conditions diagnosed under the DSM also fall within the normal human range of experience and variation. I would never be comfortable asserting anything else.

So yes, there are certainly problems with societal attitudes toward autistic people. There are also major issues with attitudes toward anyone with any other sort of mental health struggle. I don’t think we should try to resolve our problems by separating ourselves from everyone else with conditions delineated in the DSM. That more closely reminds me of the way different racial and ethnic groups in the United States worked to acquire “whiteness” instead of actually addressing the underlying problem with racial attitudes here.

The diagnostic criteria, the process of evaluation, the way the diagnosis is applied by clinicians, and the widespread lack of supports for autistic people all demonstrate problems and issues that need to be addressed. But even though progress is somewhat glacial currently, there have been improvements. The DSM-V diagnostic criteria are better than the DSM-IV criteria. And those were light years ahead of the DSM-III criteria and available diagnoses. The issues with obtaining evaluations reflect systemic issues in mental health care and more broadly in health care in general. There’s a lot of work to be done and progress that needs to be made. But removing autism from the DSM would not be progress. It would be a huge step backwards.

I’m not sure if I was really able to capture my thought process in writing. I’ve read my post now multiple times and aspects of it still don’t feel quite right. But I can’t think of a way to improve it, so I’ll let it stand as written.

Posted in Autism | Tagged , , , , | 4 Responses

How Racism Really Works

In the wake of the election, in which His Fraudulency (to borrow the title bestowed on Rutherford B. Hayes) won the electoral college while losing the popular vote in dramatic fashion, I wrote a thread on twitter about racism and how it actually works. I thought it was particularly apropos since His Fraudulency ascended to his golden throne by explicitly invoking and inciting neo-nazis and other deeply racist segments. However, many of his white votes came from segments that, strangely, do not consider themselves racist, including white evangelicals. Since the latter only exist due to explicit racism, that’s a little odd. Perhaps they even believed their recent disavowals of their racist roots. This election laid those roots bare, however, for the world to see, even if white evangelicals have eyes, but cannot see, and ears, but cannot hear. They have mouths and can speak, but those mouths are the mouths of vipers.

At at any rate, I wrote this thread for those honorable souls who believe they are not racist despite voting in overwhelming numbers for his Fraudulency, the Donald. It received a fair amount of attention on twitter, so I storified it.

This is the twitter thread for those who want to read it in its original form and the interaction it received. The storify is below. All my fellow whites, including the white women who especially let us all down, know that I’m speaking to you. If you voted for Trump, you are racist, at least in the structural and systemic sense, and this thread definitely applies to you. You are no less culpable than the whites who benefited from apartheid in South Africa, even if they didn’t explicitly support the regime. And if you didn’t vote for Trump? You still probably have a racist thread or two permeating your thoughts. It really is the air we breathe. It requires constant vigilance and effort to combat. If you aren’t fighting it, then you’ve succumbed.


Posted in Personal | Leave a comment
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