I had another blood draw last week, and follow-up today. The good news is that the boost in levothyroxine has corrected the hypothyroidism perfectly. I suspected this would be the case, because I found myself less interested in napping and I pretty quickly lost a few pounds (before gaining some back by eating my feelings). My general "energy level" is much improved. My cholesterol is also down after just six weeks of being on rosuvastatin, which makes this really the first time in my adult life that my cholesterol has ever been in the normal range. Lots of good news there.
Unfortunately, my triglycerides are actually up. I didn't think about it in the office, but she did tell me it was fine to stop taking the omega-3's I was taking to address exactly that (on the advice of my previous doctor), so I theorize that may account for the change. I theorize that because the Vascepa she's putting me on is another omega-3. All three things, the hypothyroidism, cholesterol and triglycerides are likely a genetic thing, my doctor says.
But this is all pretty good news. If I can get my weight down a little, then my overall risk profile for heart disease goes way down. I have to watch my blood pressure, but it always reads high in the office compared to at home ("white coat syndrome").
Honestly, this is the best I've felt about all these numbers since earlier this year when it was pretty clear that they all sucked. My doctor is pretty firm and direct about all of it, which frankly is something that I need.
As you might expect, I've had a lot of conversations lately about autism. One of the things that I find continually frustrating is that autism seems to be associated with low intelligence by most laypeople. On the surface of public perception, this may be a justified view. Research shows that while 5% of the population exhibits an IQ score under 70, it's about 30% among people with autism. This inevitably invites two questions. The first is, are IQ tests in some way biased against people who exhibit symptoms of ASD? The second question is, how do you account for the fact that many (most?) of history's greatest scientists and artists were autistic? The math doesn't make sense.
The perception of others aside, this matters because I'm a parent searching for answers for my child. So what then is the reason for Simon's academic difficulty, but not all of the time and not in every subject? When you mix in the ADHD on top, it's even harder to figure out. At this very moment, he's on the verge of meltdown in the other room over homework.
What I can observe in him is not entirely unlike my own experience as a child. He's very curious about the way machines work, he prefers concrete details over abstracts, he's impatient about getting to outcomes quickly. The curiosity is a good thing, and maybe so is the desire to know details over ideas, but the impatience will definitely not serve him. This was one of my biggest problems in learning to code (I was self-taught): I just wanted to put stuff on the screen, so I was slow to learn how the tools were best used, and understanding object-oriented concepts took a long time when I was comfortable with procedural code.
I'm projecting my difficulty on him, which might be wrong, but I think I see intelligence that is not itself impaired, but made difficult by the way in which he needs to learn. When he "gets" something, he can crank through it, but if he isn't there yet, then he finds it challenging to focus, and he very often comes back to things "taking too long," which is code for "I'd rather be doing something else." So much of the challenge for Simon is understanding the reasons he struggles with school, and where accommodations help over accountability. It's no wonder that they symbolize autism with puzzle icons. Maybe I'm being unrealistic that it's a puzzle that can be solved.
So if he's not in the bottom 30%, how do I help him? I don't know. Again, when you throw in the ADHD and the typical personality traits of a pre-teen, trying to work with him can be volatile at best. I do think that some of it is that inability to self-regulate emotions, and I'm hopeful that he's turning a corner there because he's becoming very self-aware when he's not. That's a big deal.
Destin from Smarter Every Day posted some thoughts (below) on how the YouTube algorithm may be changing for the worse in terms of what it is trying to emphasize. By now it should be obvious that these algorithms are rooted in seemingly innocuous intent, but end up having pretty terrible side effects. Derek of Veritasium showed how effective click bait is which makes the algorithm even worse. It doesn't seem like a deep mental exercise to figure out that making engagement the highest priority results in the lowest common denominator of quality. I definitely don't think the shorter is better direction helps anything, whether it's video or text. I don't want to be a mindless scroll zombie, I want to stimulate my brain.
This condition, where a few really "good" makers of things that have some value as art, entertainment, education, etc., rise to the top, but ephemeral nonsense dominates, is frustrating. I realize that what I'm saying is wholly subjective. I also acknowledge that there's nothing wrong with "stupid" short entertainment. The problem is that it is, in this case, a zero-sum game when a huge company controls most of the levers to surfacing and facilitating the discovery of the content. The quality loses to the trivial stuff.
I will freely admit that this is also the reason that I find myself apprehensive about creating video for distribution on YouTube, because I don't like this game. I don't need to be famous or make a ton of money (I still give Vimeo money every year just to play a part in its continuation), but I don't want to conform to algorithmic constraints to get it noticed. People seem to forget that YouTube didn't have minimums to monetize video until a few years ago. I would routinely make a few hundred bucks a year for stuff that I put there just because I didn't have to pay for the bandwidth. When I do get around to posting something, it's rarely just some long-form thing I can slap a title on. I tend to edit things and shoot 10x what I need, and that's a lot of time to invest in stuff. When I can, I like to tell a story. I'm not interested in ephemeral things.
I can see how someone might think I'm just a curmudgeon who feels left out, but I can assure you that's not it. I deeply understand how the game, and how to win it. I could do that, but I'm not interested in doing that. It gets back to Destin's point about understanding what your voice is. He's far more sincere and articulate about it, whereas I undoubtedly (maybe slightly intentionally) come off sounding like a hipster. The deeper, and probably naïve thing that I have been saying for years that it's unfortunate that so many people have given up their creations to platforms, which in the blink of an eye can change on you. It's a far cry from the days where you had your own domain names on the Internet and you ultimately controlled your own destiny, relying on word of mouth instead of algorithms. Is this world easier than the old one? I'm not convinced that it is.
Certainly the solution at a personal level is to just make stuff because you enjoy making stuff, and let the cards fall where they may. But making stuff is more fun when you can see some number of people actually seeing it.
Simon got his second Covid vaccine today, effectively about 20 and a half months after things started to get weird. There are a lot of feelings about that, starting with the frustration that someone else that we trusted ultimately caused his infection back in October. Diana and I were both double-shot in April, and we've since had the boosters as well. In fact, even before the boosters, we were well inoculated against infection despite Simon getting it. We didn't do anything special around him.
More than half of adults have been "done" since the spring, and I would say that in the general sense, we've engaged in pretty "normal" activity. We haven't done any significant travel, mostly because we didn't feel comfortable putting Simon in less controlled situations, and it's been almost two years since we've left Florida, which totally sucks. But we did renew Simon's passport and we're ready to go.
Does that mean the pandemic is "done" for us? I guess that depends. Variants will continue to occur, but natural selection dictates that the virus will become more transmissible and less harmful to the host over time if it is to survive. Given the massive levels of global infection and death, it seems reasonable to assume that will continue. There's reasonable concern about the new omicron variant because it's so different, and it isn't clear about how sick it makes people, how well the vaccines work against it, who might be most vulnerable to it.
This is frustrating, because it isn't clear when we call this over. However, I don't think there's a definitive end, just varying degrees to which we have to roll with mitigation. As a science enthusiast (is that a thing?), it can be frustrating because some of those tactics don't make a lot of sense. Wearing a mask in a venue where everyone is vaccinated, for example, seems silly since there's no significant evidence of a room full of vaccinated people infecting each other. Testing athletes constantly that are all vaccinated doesn't make a lot of sense either. On the other hand, if you have large working environments, like factories or warehouses, where vaccination is inconsistent, what choice do you have but to require masks and try to limit exposure between people?
The unfortunate thing about the current state of things is that much of the accommodation is intended to protect the folks who aren't vaccinated, mostly by choice. That fosters all kinds of resentment but also sadness, that so many people have died really for no reason. Nearly every death now, at least in the US, is preventable, not just because of the efficacy of the vaccines, but because if everyone played along there would be little to no community transmission in the first place. That's the critically important thing that has to be in place for folks that can't be vaccinated for medical reasons or they're heavily immunocompromised in the first place.
For us, and for now, things feel effectively normal. We're unlikely to get sick or be a vector for transmission. If we have to use masks in certain situations, even if the science doesn't support the situation, we'll do it because that's someone's rules, and we're not going to be dicks about it. At this point it's not ideal, but not a big deal. And we're definitely getting out of Florida for a few days.
I was listening to the Smartless podcast episode where they interview Tom Hanks, and he talked a bit about what it was like to play war characters. He told the story in particular about a man he knew that routinely met up with his former unit members, and what it was apparently like to go to war and have absolutely no idea where you would be in a few days, let alone several months. That uncertainty, he said, likely had a permanent effect on the way people viewed life.
I think most of us in my generation, the Gen-X'ers, have no frame of reference for that. We have often been able to choose our paths, though obviously not in a particularly equitable way across the many socioeconomic lines we draw. The point though is that we've never had something like a war big enough to disrupt "normal" (again, even if our normal hasn't been just). The pandemic has been the first real test for us and the generations that followed, and I don't think that we've entirely lived up to the challenge. At the same time, I think we've managed to realize that we must do better. Maybe the real challenge is ahead of us, to make a new normal that is better. We're questioning what freedom really means, and I think seeing that it comes with responsibility.
The pandemic early on required two things of us. The first was to sacrifice being around other people. This had the serious effect of causing some businesses to go under, jobs were lost, and maybe the widest effect, we got to be pretty lonely. As we better started to understand the mechanics of transmission, the second thing the pandemic required of us was to mitigate the risks as best we could with masks, social distancing and still restricting our activity. The seriousness of these effects varied largely around socioeconomic lines and also what we did for a living. I think the honest truth was that, social effects aside, this was not a heavy lift for those of us who did desk work and could do it remotely. It felt like a great many people in that category were the loudest voices against the two things the pandemic required of us.
There was a trade-off bargain we had to evaluate: Are the behavioral changes we have to make, for an amount of time we can't predict, worth helping to save lives? For the first six months, it seemed like we were generally willing to deal with all of the negatives, but as we got closer to the availability of vaccines, we got impatient. Things got much worse, in fact, with infection rates spiraling out of control and health systems bordering on collapse. In some places, it got much worse months after the vaccines were generally available. My neighbor had to get a few minor stitches from a fall while sitting on a counter in the lobby of the ER, because it was overwhelmed with Covid patients.
Much of this decline happened in part because the freedom we were accustomed to was eroded by the conditions necessary to slow or limit the spread of disease. I would argue, however, that by not taking responsibility for the situation, however difficult it was, we largely delayed the return to freedom that we were so anxious to achieve. There are so many parallels.
I was kind of a dumbass in my 20's when it came to financial responsibility. We could debate about whether or not financial stability results in freedom, or even happiness, but let's not kid ourselves. It's better to have more money than not. But in my post-college years, I didn't save anything or invest in anything. Sure, money could be tight, that's how it works when you're young, but I simply made bad choices. Saving money and making simple investments is not a big secret formula. You get wealthy when you put some of it away, and I chose not to. Now I'm trying to make up for lost time, which is hard. My financial freedom is directly tied to my willingness to be responsible for it.
You can see where I'm going with that. Enduring and possibly sacrificing a bit through a difficult time goes a long way toward enabling freedom. It's not unlike going to war against a fascist regime conquering Europe. Death overseas and rationing at home unquestionably limited individual freedom in the short-term, but taking that responsibility certainly led to greater freedom, and a much friendlier map, in the long run. The pandemic also shows us that freedom and responsibility go together.
In fact, this idea has seeped into every part of our culture. Public health is a stunning example of showing how responsibility, whether it be individuals getting vaccinated or government stepping up to fund and distribute vaccines, leads to greater freedom. Getting a shot is not a heavy lift, either, and certainly not like being asked to go to war. We see in plain terms that diversity, equity and inclusion will lift all boats with better outcomes for all. Taking responsibility by acknowledging the institutional biases baked into our society will result in greater freedom for all people to exist in that society. One of our biggest responsibilities is to make meaningful progress on transitioning to a sustainable energy economy. We've already seen a preview of what climate change does to weather, to our lands, and to geopolitical stability. Being free of our own planet's wrath means being responsible for its care.
Responsible freedom is getting over "what's in it for me, right now?" because being responsible, for our actions and for each other, inevitably leads to greater freedom. This is the great revelation that I think we're on the edge of. If we invest a little now in things, some of which are hard, the payback in terms of our freedom is going to be huge. Who doesn't want greater prosperity for everyone? We're not playing a zero-sum game here. Taking responsibility for each other is not antithetical to freedom, it is the freedom that we desire. We can reduce that uncertainty and increase stability, that is, our freedom, by being responsible.
One of the things that I've found super fun (that's sarcasm) about entering midlife is that my desire to find purpose and meaning in life is not easy. I consistently come back to the idea that I want to leave the world slightly better than I found it. I don't need to be remembered or recognized, and I'm at peace with the idea that few will care that I was a thing years after I'm gone. When I take my last breath, I'm content knowing I didn't make anything worse.
I feel like I'm doing some baseline things that help. We're sustainable energy nuts, with more than two-thirds of our direct energy consumption (including driving electric vehicles) provided by the sun. We're mostly conscious of the packaging associated with things that we buy and recycle as much as possible. I'm hopefully raising an anti-racism child who will eventually understand his privilege. I donate to a wide range of philanthropic causes. I have my weaknesses, like anyone, including ocean cruising (carbon!) and Asian fusion takeout (single-use plastic!), but I'm trying to mostly do the right things so my kid has a better future. As late parents, he will likely have a good four decades after we're gone, so I have a duty to do something to make the world better.
At some point I negotiated with myself to declare that the scope of "doing good" doesn't really matter. I alone won't eliminate systemic racism or solve climate change, but that doesn't mean that I can't do my part. Little things in the scope of our influence matter.
As I've considered who in the world has made, or is making meaningful change to better the world, I have noticed that the folks who take the big swings are frankly a little arrogant to think that they can do so. Certainly there's a component of hubris and narcissism to their personalities, right? I think that we generally find those to be less than endearing qualities in people, but I often wonder if they're necessary. I look at some of the most public folks in our time to move a needle, and they typically have personalities that make me a little squeamish. Steve Jobs was notoriously horrible to his own people, and definitely arrogant, but he was instrumental in making technology a ubiquitous thing your grandparents could use. Bill Gates' foundation has helped move us toward eradicating polio and reducing transmission of TB and HIV, though he's heavily criticized for how and where he invests the foundation's capital. Elon Musk is transforming space exploration, transportation and energy, and we could spend all day talking about his hubris when it comes to random problem solving (like getting people stuck in a cave).
I think it's really important to gauge intent. These rich white dudes in their own ways conquered the world in terms of their wealth, and with that success, became mission driven. Jobs wasn't much of a philanthropist, and he wanted Apple to win, but not because he needed the money. He believed that great design would change the way we interact with the world. Gates is always one of the top two richest people in the world, and his charity has made some big bets that were horrible failures, but his intent is to do what he thinks will lead to a better world. Musk certainly doesn't need anymore money, but what kind of person says, "We have to become a multiplanetary species for survival," while growing a car company from scratch? You probably need a sense of inflated self-importance to do those things.
I don't think there's ever a good reason to be a dick to other people (and I admittedly, in the moment, sometimes forget that), but there are some brilliant people who benefit from the confidence that they are more capable than they think. I know that my biggest constraint to achieving things is myself. Maybe a little hubris and narcissism helps you get over your self-imposed constraints. The hard part is having the wisdom to have the right intent.
I got tickets to see Tears For Fear and Garbage in the spring. I saw the former once in high school, the latter six or seven times. I would consider the second and third TFF albums to be among the best ever. Thirty plus years later I still think they're pretty good. Garbage I would say that Strange Little Birds (2016), their second to last album, is about as good as their debut (1995). That's a big spread, 21 years.
But the weird thing for me is that it's about as nostalgic as I get. I don't listen to really anything that I did in high school, which included a lot of Def Leppard, Depeche Mode, Debbie Gibson (I was into the D's) and various R&B and rap artists. Some of this might have to do with the fact that I graduated in 1991, which you may recall was the year that Nirvana's Nevermind and Pearl Jam's Ten came out. The pivot of rock music to something a lot less produced and shiny was quick and brutal for the hair bands. Alternative radio became a thing, and it kind of reminded me of some of the new wave and progressive stuff of the 80's, only with more female led bands. I loved it.
There are definitely some albums from my college years that I still lean on, including James' Seven, a few of the Radiohead records, REM's Out Of Time, The Breeders Last Splash, Nine Inch Nails The Downward Spiral and basically the whole catalog of Toad The Wet Sprocket. But really, I've never stopped looking for new things. It's not just me, either. Diana is largely in the same boat. It's kind of hard to even find the new things now, especially since we dropped SiriusXM and AltNation, which was starting to get boring and homogeneous anyway (how many emo bands that sound exactly the same and/or include Travis Barker do we really need?).
This year has been especially dismal for one-offs and singles that we like. Our annual playlist only has 22 songs. It was a great year for some great albums, fortunately, and I still love to lose myself in 40 minutes or more of music.
Nostalgia is clearly still a big deal, and it sells arenas and stadiums. I don't know if I'm typical for my Gen-X peers, but the idea of going to a show to see Poison or Motley Crue is not something that will ever appeal to me. Even Tears For Fears is a little bit of a stretch, were it not for the brilliance of Seeds of Love. Garbage is still making music, though they do lean hard on the first two albums for their shows.
This year I was excited to hear new things from Wolf Alice, Halsey and even a very different album from Foo Fighters. Grouplove's latest is still growing on me too. I've never bought a Glass Animals album but I love all of their stuff. Hopefully these artists, and others I've never heard of, can keep feeding my new things, because I'm not really interested in going back.
It's once again time to break out the holiday movie collection. For some reason, Diana and I managed to build this routine within maybe one year of cohabitation, and it has stuck with us ever since. It's not a long list, because it doesn't have to be considering these get watched inside of a four week-ish period. What's surprising about it is that every year I fully commit to watching. I don't mess around with my phone, and I just turn off my brain in a way that's unusual for me.
So here's the list, in no particular order.
I would have never guessed that a goofy Will Ferrell movie would become a classic. I suppose part of it is that it I see it differently now that I have a child. Simon laughs out loud at it every year. Also, every year, I'm shocked to see Zooey Deschanel with blonde hair. Also, at the time it came out, I never thought she, or more appropriately, She & Him, would have a Christmas album I listened to every year.
This is probably my favorite, in no small part because I absolutely had the worse celebrity crush on Kate Winslet and to some degree Cameron Diaz back in the day. That's why I always find it implausible that Jack Black would hook up with Kate. It's not that I hate Jack, I'm just protective of Kate because of his character in Orange County. Because, you know, part of me still pretends these are real people and not characters. Diaz has insanely good comedic timing, and I'm sad that she's not acting anymore. She's more talented than anyone gave her credit for. I also adore the old Jewish screenwriter neighbor.
This is such a fantastic ensemble cast. There isn't a single actor I dislike, which is a huge credit to Sarah Jessica Parker because I don't care for anything else that she has done. That she plays the unintentional homophobe and racist is satisfying. Rachel McAdams and Luke Wilson in particular are fantastic. But I like the idea of this huge family coming back to this old house full of history, and the subplots. It's also kind of sad, and I like that too.
I suppose I'm kind of a sucker for this because of its quotability and the scenes in Cleveland. I actually saw this in the movie theater, as I think many people around town did. In true cable TV fashion, even though we don't have cable TV, I like to save this for Christmas day, and I'm not ashamed to let it play twice. Or more.
I don't generally care for old movies, but I don't mind White Christmas. We inevitably do the various claymation classics at some point, too. I'm wondering if Noelle may make it into the rotation again this year on Disney+, because I'll watch Kendrick in anything. We end up watching Muppet Christmas Carol too, even though it's probably the weakest of their movies. A Bad Moms Christmas is also one I've grown fond of, because you can't go wrong with Bell, Kunis and Hahn. That's comedy gold. I probably need to include Bridget Jones's Diary in here even though it's not strictly a Christmas movie.
We've had a rough go of things the past few days. Today was particularly bad. Simon's doctor wanted to up his dosage 25% for the ADHD medicine, based on the teacher feedback and our own observation that he's just not plugged in and focused. These medicine changes are always rough. We don't know if the anxiety meds do anything at all, but you can't change more than one thing at a time, because you won't know what the net effect of the changes are. He has been extra emotional that last two days, unable to self-regulate to the point of having a continuously intermittent meltdown. If there's anything good to report, it's that he is very self-aware that it's happening, but that's what's so heartbreaking about it. He's suffering, he knows it, and we simply don't know what to do.
If that weren't enough, we got his grades from school and they were essentially perfect. That's absurd. His grades varied a bit last year, more than good enough for grade promotion, but showing some weakness. That means at his new school, he's either not being challenged at all, potentially not being taught at grade level, or he's being graded for showing up. The whole selling point of this school was to get his education right-sized for where he is. However, we're kind of in the same place we were in the public school: No one seems to agree about where he actually is, how to evaluate him, what the plan is to keep him moving forward, and how he best learns. No one has been able to really crack his code. My gut instinct is that he's a brilliant kid who doesn't handle discomfort well, and learning new things makes him uncomfortable. So what do we do? Obviously we're going to raise the concern with the school, but then what? This is a very critical time for him, the middle school years.
We're mentally and emotionally exhausted, and that's not even getting into our own individual things we're dealing with. Particularly after having to relive my own childhood for the autism eval, I'm hyperaware of Simon's potential for a great or terrible childhood. It is a very heavy and serious burden to help him steer through the next eight to ten years, and have something happy and productive to show for it. I'm not necessarily trying to get him to college, though it's necessary for some of the aspirations he has, but how do we set him up for a lifetime of learning when no one understands how he learns?
That hard thing about seeing how self-aware he is, believe it or not, is the thing that gives me hope. If he can see how he struggles, he may be more inclined to figure out how best to compensate for it. I see how adaptation is the thing that turns autism from a liability to an asset, but I don't know how many kids are able to do that. A lack of adaptability is literally one of the core traits.
For some reason, I feel a sense of hope when I write things down. I have to figure out where Simon can get the same feelings.
One of the comical things about super fans is that, in many cases, they seem to hate the thing that they love. Nowhere is this more true than among Disney theme park fans, which is part of the reason I think that I wouldn't typically self-identify with them. Sure, I've seen plenty of this phenomenon among roller coaster enthusiasts for the 20+ years I've been fostering those communities, but it's nothing like the Disney people. The bloggers are the worst. Everything is a tragedy that would cause Walt to spin in his grave. They're very change averse, which is ironic since Disney himself said nothing would ever be "done" at the parks, but they also scrutinize every little thing and find a way to make it a travesty.
The tech personalities on blogs and review sites and YouTube are often just as bad. This is the time of year where you can reliably learn all of the reasons that the latest iPhone or Pixel or Galaxy is the worst thing ever. I see it among Tesla fans. Same with video and photography enthusiasts and the latest gear. It can be exhausting.
I think that there's some value in some criticism from people who are very plugged in to a particular product, provided that it's constructive, but what it often lacks is any grounding in what the average consumer would see and understand. Diana's phone, for example, was fairly inexpensive, and as such not top of the line, but I think you'd be hard pressed to find any typical consumer who didn't find it to be an excellent product. Meanwhile, at Walt Disney World, all of the cut backs and changes in the last year, most of which were made in response to the pandemic, are cause to expect the end of days. And now that they're charging for premium queueing, that's the end.
Not only do these folks not represent John Q. Public, but you know they will be first in line to renew their annual passes, get the next phone, spend the next dollar on the thing they seem to despise so much. I don't get it.
I can't believe it has been 30 years since the founding of Blue Man Group. My fandom really began when The Complex was released, which also led me to love Tracy Bonham and Venus Hum. When the DVD came out from that tour, I was hooked.
The first performance I got to see was the Vegas show in The Venetian, and then three arena shows in 2006/2007. I saw the second public show in Orlando when it opened (all of the above with Catherine I think). Then Diana and I saw the arena show late in 2007, and in Chicago in 2012. I lost track of how many times we saw the Orlando show, and it hurts that it's gone. I introduced Simon to How To Be A Megastar, and he still listens to it all of the time.
It's hard to describe the appeal to someone who has never seen a show. It's weird, genius, different every time but consistent. We saw one of the last shows at Universal before Covid, and I feel like I took for granted that we would be back later in the year. I hope that Cirque du Soleil, the owners, are ambitious enough to mount another tour at some point, and I wouldn't mind a new permanent show here.
Thanks for all the memories, Blue Man Group!
Last summer, as the pandemic (and everything else about the world) started to get really serious, I asked the question about whether or not I in fact had ASD and ADHD. As I said then, it was suggested by therapists that I probably should find out in a formal way. Even then it had been on my mind for a few years. This summer, I started to think more about it for a number of reasons, and decided it was time to endure the diagnostic gauntlet and find out. I finally had my evaluation this week, and yes, I can finally confirm in midlife that I have both conditions. I'm not at all surprised. It just means vastly different things at this stage of my life than if I were a child today.
There's a lot to unpack here, so let's start with the stuff that you may not see or understand if you don't have a child with a similar diagnosis. They call it a "spectrum" because the condition described varies a great deal from person to person. And you'll notice I don't say in terms of "severity," because it's not correct to assume that being neurologically atypical is bad. When I was a kid, the unfortunate thing is that autism was viewed as Rainman at the adult end and non-verbal children on the other end. That there are more diagnosed cases now is mostly because the definition is a lot wider. The definition is also evolving because the context changes for most people as they get older. While clinically it is often viewed as a disability, one would generally consider a disability to be an impairment of some kind, in this case typically with social interaction, inflexibility and exhibiting repetitive behaviors, among other things. If these are serious enough, a person may need support, but at many levels a person may simply learn to cope or compensate for any of these impairments. The distribution of IQ scores tends to be slightly lower than average for people with autism, but I read an abstract that indicated that may even out as more people are diagnosed. The hardest thing to understand is that the same impairments may actually make for super powers, in the figurative sense, able to do things a neurotypical person can not. How's that for making it harder to understand?
Diagnosis for an adult can be tricky, again, because one can generally compensate for things that a child may find difficult. In my case, my childhood history had plenty of obvious signs, including social difficulties, gravitation toward adults instead of peers, extreme picky eating, an early aversion to sand and getting in water... it was a pretty long list. Combined with a number of personality inventories and surveys, the math was fairly straight forward. One of the more revealing things about compensating for any "impairments" is that Diana scored me very differently in her inventory responses, and she knows me better than anyone. For example, you probably wouldn't know that engaging in trivial small talk is kind of exhausting to me, but I can do it and you wouldn't know that. The ADHD bit was easy too, when you look at something like my high school ACT score in the top 98th percentile but my GPA was painfully average. College was the same, and did not correlate to my IQ score, which is also unusually high. I wasn't "bored" or "unchallenged" as people suggested back then, I just didn't do things I wasn't that interested in.
Having relived many parts of my life story for the purpose of this evaluation, difficult as it was, gives me an opportunity to reframe a lot of self-perception. I remember in college in particular feeling like my failures in terms of relationships, my grades and certain conflicts were the result of deep personality flaws. Understanding now that my wiring may have played a factor in this, that I can attribute some of it to something other than my decisions, really changes things dramatically. I'm careful to say that it's not an excuse for poor decisions, because frankly even poor decisions are useful if they result in learning.
Real life example, I had this epic meltdown in fifth grade. The teacher accused me of something that I didn't do, and I could not reconcile being held responsible for whatever it was. My mom had to pick me up from school. There were discussions with the teacher and my parents about how I thought I was perfect, and I believed it for the sake of moving forward, though it made less sense than being accused of whatever it was. Recalling this was one of the first things that came to mind when I suspected, yeah, what my kid is going through, that's me.
But even in a more adult context, I can call out challenging interactions with people that I could easily chalk up to missing certain social cues. I can see why even in situations that I can fully compensate for whatever impairments that my brain wiring may cause, I'm exhausted by that compensation. I may even feel justified in certain professional scenarios where I felt I was treated unfairly.
I want to be clear that attributing difficulty to autism is not me making excuses. While the psychologist was quick to point out that one has to give themselves a little room for the things that may not come easy, I still have to make choices and be self-aware enough that I'm making the "right" choices in life. What changes now is the context. The inputs always included this thing I didn't factor in before.
Something I immediately noticed after Simon was diagnosed, is that there are many communities of people, including parents and autistic people themselves, who have a great many conflicting opinions about labeling autism. I find it kind of funny, and I think I'm entitled now to find it funny, that the core characteristic of inflexibility means that almost every issue in those communities has two inflexible sides. Heck, that I'm so into gray areas is one of the reasons I was skeptical of my own diagnosis. But while the psychologist evaluating me said I would typically be labeled as "high functioning," given my adaptation, compensation and high IQ, there's a pretty vocal group of people that want to throw that term away since it implies there are "low functioning" people. I mean, there are arguments even about self-labeling as "autistic" or "on the spectrum."
These are not unreasonable concerns, because the words often dictate what kind of support or services you're eligible for. But clinically, it's also hard to know how to help people if they're not speaking the same language to describe the nature of autism. I don't even know how or if I want to self-identify, or in what circumstances. I think in my urge to be self-aware as a conduit to self-improvement, I've already had many discussions with people, especially professionally, about what my blind spots might be because of my therapist consensus around a likely diagnosis. I imagine these can (or have) been used against me, but it seems like the right thing to do. And if you're an optimist, you can see ways that an apparent impairment is actually an opportunity, which I'll get to later.
For me, I think the clinical summary from my evaluation provides some necessary labels. But I liked this part:
The DSM-5 stresses that there be functional impairment in order to diagnose autism but, there are a myriad of autistic people who are not overly disordered or disabled. Autism is a neuro-type, a spectrum of multiple continuums of characteristics, each of which span a wide range of expression, which can change depending on both acute and chronic stressors.
In other words, I'm not Ray in Rainman or a non-verbal child, and in most adult situations, I'm able to adult just fine.
Some years ago I remember reading a number of essays about why ADHD was not only not an impairment, but an asset. There are simply many situations in life where that energy can be useful. I can relate, now that I know it's there, because it explains why I seem to be able to context switch a lot as a manager, whereas in a maker position, it was hard for me to buckle down and do one specific things for hours unless I was totally into it. It all makes sense.
Many people with autism struggle to deal with ambiguity and abstract things. I believe that I'm firmly in that camp, but again, it's possible to flip that on its head and show how it's a strength. I've had a ton of interview situations over the years where the interviewer wanted to iterate over some abstract concept, and I struggled with it every time. But here's the thing, in leadership positions, where you have to get people together and move them collectively toward certain outcomes, reducing ambiguity is something you can do at super hero levels. I think this is why I'm good at project management, because I strive for that common language around predictable outcomes, which means that makers build things that decision makers want. It doesn't mean that I'm averse to change, pivots or deviation, because even in those cases I'm good at getting everyone to the new thing they're driving toward.
I realize that not every impairment can be turned into a strength, but this gets back to my earlier comment that I can't exactly call autism a disability. I mean, scientists like Einstein, engineers like Musk, deep product people like Steve Jobs, you can't say that any of them "suffered" from autism. Many of the world's great artists and entertainers are in this boat, too. If autism limits certain conventional inhibitions, it stands to reason that we can try impossible things that are not expected to succeed.
I have to be careful here, too, because I don't want to suggest that a non-verbal child who can't care for himself just hasn't found his opportunity yet. Impairments can obviously be debilitating, especially if they're severe. I think for that cohort of people who are average and above, there are still accommodations that may enable long-term success. We've had to put these out there for Simon, and in the next few years, we'll see how well he develops coping skills. My non-expert opinion is that he has a lot of anxiety about the learning process itself, but seems to work with what he's mastered with ease. I'm not sure what an adjusted adult may need, other than a little grace to overlook some of the social deviations they may exhibit. That's why my eye contact isn't great.
I think this changes my relationship with Simon, but I don't know how yet. When I first told him, he was very sad for me, because as he understood it, life would be very hard for me the way it was sometimes for him. We're still talking about how my biggest struggles are in the past, when I was his age. I have to be careful about that, because I know his social difficulties will most certainly get worse before they get better.
The challenging part for me is something that I've talked about before. I can't model my understanding of his challenges through my own lens, because no two people are the same. But especially having recently relived eating lunch in 9th grade in the guidance counselor conference room because I was being picked on, that's not a great feeling to know he may endure similar things. I can appreciate that he will have challenging encounters, and I feel an enormous burden to figure out how to help him not just get through them, but learn from them. That can be hard when I'm the bad guy that he's sure has no appreciation for what he's feeling.
And therein lies the opportunity, I hope. Even though we certainly have different experiences, he's closer to a place where he logically can't exclude me as not being understanding. His anxiety is definitely higher than mine, and discomfort over even mundane things triggers him. But I get that, and I have to get beyond my instinct of "get over it" without giving him too many shortcuts and accommodations for everything. It's not easy.
I am not yet at the point where I really know what to do with this. The ADHD part, something you can manage with medication, I'm not sure that I need to. The nature of my work in recent years is that I context switch a lot, and if being able to do that successfully is a "disorder," then I don't need to fix it. The autism part is way harder to figure out, and you can't medicate for that.
I don't know that I want to identify with it, and I'm certain it doesn't have to define me. I think it's a part of my story, mostly. I don't know if it needs to be more than that.
It wouldn't be surprising to hear that I believe I need to be more of an advocate around autism issues, for me and Simon. The psychologist made the point that my empathy here may contribute to my deep beliefs about standing up for marginalized people, that social justice and equality are important because I'm empathetic as a person who has been socially marginalized as a child. That makes a ton of sense to me.
I think we have to stop avoiding the subject as well. Autism is not synonymous with brokenness. I don't know if Gen-X'ers will widely seek out this kind of diagnosis, but at least 1 in 50 adults have autism whether they know it or not, and every younger generation came of age with increasing childhood identification. That neurodiversity is out there, and we would be OK talking about it, and what it means to include people who are wired a little differently.
I can tell you this, I'm sure I'll keep writing about it.
It felt amazingly normal to visit the IAAPA Expo this year, and it occurred to me that I've been going to the attractions industry trade show now on and off since 2000. I think I've gone most every year since I moved here and it was primarily headquartered here. Things have changed a ton for me in that time, but not the business. These days, I mostly just try to catch up with anyone that I consider a friend, and not really for anything specific to CoasterBuzz. There are a few reasons for that, not the least of which is that I don't have the desire to create content the way that I did back in the day. I feel like all of the things have been covered, and they haven't changed all that much. (I think that's why we kind of non-deliberately stopped doing the podcast before podcasts were cool... we ran out of things to talk about.) My network has also shrunk a great deal, because people I knew moved on to other industries, retired, etc. That said, in the few hours I was there this year, I did catch up with six people, only one of which I was intentional enough to contact ahead of time.
But I sure do remember going for the first time in 2000, when it was in Atlanta. I was only five years out of school with a journalism degree, so I felt like I had something to prove. There were a lot of enthusiasts that went in those days, and since I was working at the time for a B2B media company that did trade shows, I never really understood why. People are there to do business and sell product, and no matter what industry it is, a lot of those products aren't very interesting. I decided ahead of time to try and compose an editorial agenda that would be interesting to the enthusiast crowd, but also the industry itself. I arranged one big interview ahead of time, and that year it was Dick Kinzel, who was CEO of Cedar Fair. Then I networked to a few ride manufacturers that had a story to tell, in this case Custom Coasters and Setpoint, and did some interviews with their people and featured some of their products. It really worked out, and I had a ton of stuff that was general interest and not strictly enthusiast oriented. With the site less than a year old, it established the focus on industry news.
The next year I basically followed the same pattern, with Will Koch from Holiday World, plus the heads of Arrow and S&S. Again, really positive feedback and traffic with a ton of original content beyond photos of ride manufacturer booths. While I've attended shows on and off since then, and even spoke at the 2007 and 2008 conferences, I never really went all-in on writing stuff since then. It's just too hard to do when you have a family, a career, and frankly not the same level of interest.
The industry has consolidated a ton over the years, and there are definitely the same group of mature players in the ride space, including water rides, that have been around most of the time that I've been going. A lot of smaller equipment vendors have come and gone, and it's weird to see service companies making big splashes, especially software companies. That surprises me because the possible addressable market on some of their use cases is not large. Even as well as I understand it, and having worked briefly in it, I'm not sure I would endeavor to build a company around products for that industry. It feels enormous but I don't think that it is.
So while I'm not as active as I used to be, it's still fun to catch up with people when they're in town, and see what some vendors are up to. Free ice cream and skee-ball isn't bad either.
I had to send my laptop back for a warranty repair, which means sending it in for a replacement. It's a Surface Laptop 4, and I've loved using it, but it suddenly stopped charging via the Surface connector. It would still charge via the USB-C port, but I don't have a charger that puts out the same wattages, so it was slower. Also, since it's inside the first year, I'm not OK with any defect.
To Microsoft's credit, there were no questions or anything, I just put a warranty request in, I instantly got a shipping label, and I sent it off to El Paso, Texas. The bummer is that I have to back up whatever I have on it, then do a reset to clean off all my stuff. They send back a "refurbished" unit. This isn't the worst thing, since everything on it is generally replaceable. All of the code is on GitHub, and I don't think anything in the document folder is not found elsewhere. So when the replacement comes, I just have to reinstall my developer stuff.
The replacement unit I got back was indistinguishable from a new one. I did a full battery cycle and it was about what I expected, which was 8 hours doing web browser stuff at almost full brightness. I'm disappointed that I had an issue with the computer, but getting it replaced was completely low friction, and only took about 10 days.
For obvious reasons, I'm fascinated by the ways that brains are wired among the neurodiverse (read: people with autism). This topic helps me better understand my child and myself. I'm particularly interested in the subject of pattern matching, because of the extraordinary things I've observed Simon do, and how it relates to my own journey.
There is extensive research around the ability of autistic people to recognize visual patterns. I remember Simon, at the age of 4, able to recall exit numbers and directions to places he had been only once, and that seemed extraordinary. The funny thing is, humans tend to behave in patterns, to various degrees of predictability, but we're pretty bad at recognizing those patterns. In fact, I think we're generally not great at recognizing more abstract things, or things that are not well defined. So while Simon can tell you how to get somewhere with stunning accuracy, I know from experience that he doesn't understand the cause and effect relationship between behaviors and consequences.
I can completely relate to this. I had an interaction today where I was presented with some abstract problems where the solutions weren't based necessarily on things that you could describe in enough detail to validate them. That ambiguity was a mental block for me, but I could compare it to non-abstract situations where I could systematically reduce ambiguity to the point of arriving at successful solutions.
As frustrated as I get in those situations, I've become very self-aware of them in recent years, thanks largely to Simon. I've come a long way toward understanding that when Simon questions something, he's not being obstinate, he's trying to reduce ambiguity. I'm the same way. It doesn't mean that I'm less effective at problem solving, quite the opposite. I would argue that I'm very thorough about resolving ambiguity because the longer it's there, the more uncomfortable it makes me. The challenge, whether it's following directions without questioning them for Simon, or me trying to roll with that ambiguity, is that it's difficult to reconcile that as a condition of social contracts or expectations.
I recently realized that this is the reason I can't stomach to fly Southwest. The idea of getting on a plane and not knowing where I'll sit stresses me out. Heck, when I buy upgraded seats on JetBlue, I'm not doing it because I want to be VIP (OK, maybe a little), it's because I want to know I'm going to have the seat that I want and dibs for the overhead space to stash my bag.
If living with autism means rolling with ambiguity (which is not the same thing as change, by the way), sometimes I wonder if our culture has made it harder to develop those skills to compensate for the challenge. I mean, Amazon gives us two-hour windows about our deliveries. The things we don't know we can find out almost instantly on the Internet (assuming we're willing to engage in critical thinking). Disney can tell me what the queue times are going to be like for every attraction. And our politics sure have become unambiguous, where you're for us or against us.
But just as people with certain challenges find ways to use them to their advantage, like people with ADHD able to successfully and frequently context switch (also might be me), I think that reducing ambiguity to improve understanding and recognize patterns is of huge benefit to people with autism. It probably requires a little extra grace from your friends, coworkers and partners, but I think it's worth it. I know I want to be better about offering that grace to my kid.
About a year ago, I wrote down some thoughts about working with Blazor, the web assembly (WASM) bits that Microsoft created as a compliment to ASP.NET. I got there because I had a real thing that I desperately wanted to build, namely my own music locker service. As I've explained before, I'm at an age where I had CD's, and then a bunch of MP3's ripped from those, and so I'm not content to use subscription services. I still prefer to buy music, to own, even if I don't get the physical artifact anymore. Maybe more importantly, I don't want to keep recreating playlists over and over again. I started with Amazon, then they abandoned serving anything you didn't buy from them, then went to Google, who killed their service and migrated to YouTube Music (with ads between the music you already owned). I just got fed up with it.
Unbelievably, a year has passed since that exploration, and I really didn't do much to change or update MLocker since then. It has mostly worked as expected since then. I say "mostly" because it was not without a few hiccups. It won't work in iOS, because Safari (which also powers the web view in Chrome and Firefox, apparently) won't allow audio HTML elements to be played without human interaction, so basically I can play one song at a time. So no using the iPad and Bluetooth through the stereo. There was also a bad build of Chrome that was out for a month last summer that broke not just Blazor, but most WASM apps. The solution was to either use the beta of the next release or turn off some feature flags, which, you know, normal people don't know about. The server side of the app also spent some time on a less reliable host for awhile (I think, because cloud), where it was slow to respond to requests, so it seemed to die for long intervals between songs. Also, getting deployment right is challenging because, depending on the tooling, the hashes might not match the files as uploaded, causing errors, though I've narrowed this to deployment from my laptop (cloud based builds are on ephemeral instances with no crusty files).
Some of that sounds serious, but it's really not. The truth is that I've been using this almost daily from my phone and it works reliably. It looks like an "app" on my phone. I never have to recreate a playlist ever again (hopefully). In fact, now that I understand how to sort and catalog the music, it's an even bigger mystery why Amazon and Google used to mess up my files or fragment albums, especially Broadway cast recordings (hint: group on the "Album Artist" field first). Tesla can't get it right either in the car when you plug in a USB key.
Where can I go with it? I think the first thing is trying to really figure out the offline scenario. I'm probably not that far from it, but proper web apps running offline does have some challenges. I've solved some of the problems already. The album art is all cached on the device already. I don't fetch the song list or playlists on startup. It does hit the server on load, but transfers only 260 bytes (not kilobytes or larger). I have a hacky solution for caching song files that I'm not entirely sure I like. Right now it's all potentially subject to eviction by the browser, but I think I can solve that. It also calls the server to increment listen counts, which I'm sure I can queue. What I'm thinking about is the total offline scenario, like I'm on a cruise.
Of course, building a phone client app would make it easy to solve all of those things. Maybe that's not really as much work as I think it is, because the API's and the data models are all there and ready to go. I just think about how every single time I've started to go down that road, there are a bazillion SDK's that take up half of my hard drive, and something inevitably doesn't build right. It's not impossible though, and I've got an old MacBook Air that still works as a build agent (or at least, it did last year).
There's a small part of me that wonders if there's a market for this. There are some existing services, but they don't have a long shelf life. Also, the people owning their own music tend be audiophiles that like the gigantic un or barely compressed file formats, which turns the value proposition on its head. My cost is about $2 a month for the storage and bandwidth (it shares compute with CoasterBuzz), and I have around 8,000 songs. There would have to be some kind of tiered cost, and I'm sure $10 is already the limit for what people would consider.
In any case, as much as this is still a science project, I don't think I've enjoyed building anything as much as I did this.
I got a release out for POP Forums finally, the first significant one since August of last year. Not really much in the way of feature work, but at least I'm current on all of the frameworks and things. Then I updated the hosted version and CoasterBuzz with it, and everything is running on the new stuff now. The work I did ahead of time certainly helped.
We get new releases of .NET every year now, but last year I didn't update all of the things because certain things (Azure Functions) weren't supported, which is also why I didn't do a release. Every few years they do a new release of Visual Studio, the primary tooling app, and this year is a particularly big deal because it's now a 64-bit application. It also does this amazing thing where you can change code while you're debugging and you don't have to stop and rebuild. It's very exciting, and if you're not in this line of work, you'll have to take my word for it.
All things considered, this was the smoothest update to the framework for as long as they've been in open source mode, with the flip to the run-everywhere Core framework. Five years ago, we were just getting to the first supported release, and the tooling and support, especially as it related to Azure, was not ideal. The format of project files were changing, which by extension meant build pipelines were constantly changing. But this time, all of the product teams put stuff out there in the expected cadence with betas and previews on the way. It was really glorious. Congrats to all of the folks that made that happen.
I'm not sure what to work on next. I have a private project I've been working on, and I feel like I should get MLocker to some kind of milestone that's release worthy. I've been using it almost every single day for the last year, and it more or less works, just not in a completely disconnected way. It needs a fair amount of refactoring, too, since it was my first attempt at using the Blazor. If I were really ambitious, I'd make mobile clients for it, which is something that I haven't messed with in years.
It's coming this weekend, the dreaded "fall back" in time. When even way down here in Florida, 6pm is entirely too dark. Sunset will be at 5:37 on Sunday. Ugh.
I'm very sensitive to needing light, which is kind of hilarious because I also tend to sunburn easily. As I've said countless times, winters in Cleveland were just brutal, and I didn't truly appreciate it until I moved to Seattle, believe it or not. Yeah, what you think winter is like there isn't accurate. It "mists" a lot of the winter, but you don't get weeks of flat gray skies like you do in Cleveland. I knew moving back there that we couldn't stay very long. A lack of sunlight definitely fuels non-happy feelings for me. I hesitate to call it depression, but it's probably that. I've been feeling it today with one of those rare total wash-out days of rain.
Technically, we're returning to "standard time," which as I see it, isn't great. I don't know a single human who would prefer for it to be getting dark when they're done with work (assuming they work a 9 to 5). It seems to me that "daylight saving" should be standard, and year-round.