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In retrospect it should not have been such a leap as it was. My mom's cousin Kathleen is autistic. I think that one of the things which slowed that connection down is the fact that Kathleen also has developmental slowdowns, while I definitely did not. Well, except in relation to emotional development, perhaps? But let's not digress too far just yet. I was identified as gifted early on and put into a gifted program. I was also booted out of that program the same year because, while I was doing extremely well in the program, I wasn't turning in any assignments in my "normal" classes. Really, I pretty much just didn't do any of them. No adult could (or would) adequately explain to me why I was being asked to do these assignments and I couldn't see any benefit to them, so I read ahead in my textbooks and brought other books to read as well. I'm not as bitter about it as it might sound. It's actually kind of amusing to me looking back. Adults were literally insulted and angry at my 8 year old self for expecting them to explain themselves to me and ignoring them when they refused. To me it was just logical, while to them I was basically being a little asshole. At any rate, knowing Kathleen was autistic I associated Autism with developmental delays, just as most people do.

The fact is that when you take a close look at my mother's side of the family there is a long history of neuro-divergence which manifests in a lot of different and complexly intertwined ways. There are a lot of extremely high achievers, a lot of alcoholics and a lot of what has always been taken for mental illness. As I get older I question the validity of that last perception more and more. Relating to the world differently should not lead to such quick judgements.

I used to stim a lot as a child. I almost forgot how I used to do it until I thought about it later. I had certain sounds I would make that were soothing, certain phrases I'd repeat. My hands were in motion a lot. Those sorts of things brought the bad kind of attention from adults. In the fourth grade I joined the school orchestra, playing Violin. There was a girl in the orchestra with me who had a habit of picking at the skin on her fingertips whenever she had a hangnail or a loose piece of skin (as inevitably occurs a lot as a side effect of playing a stringed instrument, even after heavy callouses form). I tried it, and it filled that need to have my body do something when I was overstimulated or nervous. As crazy is it sounds (and is) I still have this self destructive habit today. The fact is that it filled that need without bringing unwanted attention from adults for being "weird".

I have two older brothers. None of us have exactly fit well into society. My oldest brother has probably had the most difficulty, and I'm 100% convinced that he is neurodivergent. My other brother, Tim, is a different case altogether. Tim went to drug rehab for the first time at 13 years old, then again at 17. As he settled into adulthood alcohol became his drug of choice. Now, Tim seems for all the world to be an amazingly outgoing and friendly person who has 100 fast friends within hours of landing in a new place. While I hated the cloud that existed for so many years which kept us from being able to communicate on a deeper level, I always knew that he was an incredibly giving person.

Fast forward to shortly after the time in my life when I was coming to terms with being Autistic myself. Tim was fairly newly sober (and a number of years down he still is today, thankfully). We were talking on the phone, really talking for what seemed like the fist time since childhood. I wanted to tell him that I finally understood this thing about who I am that has been such a huge factor in my life. I began to tell him about the diagnosis, and how much more sense my life made after. He was quiet, for a long time. So long that I thought the call dropped. When he did reply he dropped a bit of a bomb. Tim is not the hyper confident social person that he always seemed to be. He has crippling social anxiety. So much so that in order to appear normal he has always overcompensated, and alcohol was the crutch that enabled him to get through all of those painful interactions over the years. And the crazy thing is that he had been wondering recently if he might be Autistic. Now, I don't know if he is or not, but I do know what it's like to mask constantly every day, and how exhausting that is. He may well be on the spectrum. I just never considered it as possible to present in those ways until we had that heart to heart.

I want to share an article from someone pretty well known in the software world, Jonathan Turner. They've got a pretty huge YouTube following, were the original author of the Rust Language Server, led the TypeScript project and were until a few days ago on the Rust Core Team. They are also Autistic and Non-Binary, and as this blog post explains it's difficult to separate cause and effect between the two.

> As I sat reading my diagnosis I just kinda started to unzip the first outer coat of many coats I'd learned to wear for the first 40 years of my life. I listened to podcasts, read articles, listened to other folks, and just tried to understand anything. Even more fundamental than sexuality, or understanding gender, was this idea that I had be fighting extremely hard to look and appear normal to the world.

I have hated my entire life the expectation that I am the one who has to adapt to society. We're talking about a society that was designed and has functioned for years to exclude people such as myself from meaningfully interacting. I couldn't have expressed this any better than JT did.

> Sex is nice, but it has nothing on the bliss of a hyperfocus. Losing track of time, where hours are there merely to serve as a dimensional tube to channel more of your topic into you. People are lovely and should be a part of life, but it's sad that many folks will never understand what it's like.

My first marriage was a failure. I don't have a lot of friends. I have friends, but what I have is a small number of friends who are like family and a large number of acquaintances who I keep at a distance. My ex-wife hated how much I ignored her. After a while she stopped trying to communicate with me. What she didn't realize is that all of those times when she thought I was ignoring her or not listening to what she said, the reality was that at those moments I literally didn't even know she was in the room with me. All that existed in my perception was the thing that had caught my interest, whether it be my guitar or a book or, later on, a computer related problem. Everything else in the world just goes away. This can last for hours, or even days on end. I have to be reminded to shower and eat. But the feeling is indescribly amazing.

I play guitar. I used to play in a lot of bands. This very social interaction might at first seem at odds with what I'm describing but I can assure you it isn't. When playing with other people, in particular those who I've known for a long time, they (or at least the notes that they are playing) are the only thing that breaks through into my perception. Somehow they become a part of it, and in doing so manage a thing that nobody else can. They are able to communicate with me while I'm in a hyperfocus. Not verbally. I can't speak (or sing) while playing guitar. I certainly can't respond to someone talking to me. But I can and do respond to the music as it grows and changes. I like to think an audience can get taken along for the ride, too, but they pretty much also disappear. It also means I definitely am not going to ever be "the frontman", but I wouldn't change it.

> With each thought, I felt like I stripped off another outer coat and set it aside, until I could no longer understand how to communicate with people anymore. I still knew the tricks I'd learned. I still know how to "mask", to use patterns I'd seen other people use to appear more normal. But what I wanted to know was "what was I like when I didn't do that?". In essence, who was I?

Indeed, I grapple with that myself. But it's something that I've grappled with long enough to realize that so many of the things which are a sign of Autism are also inextricably tied to my personality and sense of self. You cannot separate "me" from "Autism" without fundamentally changing "me" into a different person. The idea of trying is painful. I wouldn't want to do so even if it weren't the case. Maybe I might feel different if I were my cousin Kathleen, but somehow I don't think that's the case.

I don't really think this Neuralink device is going to get a lot of traction. For one thing I doubt that it can do a lot of what Musk claims that it can do. For another thing, I don't think society is set to embrace it right now. But a few generations of development could mean that a similar device does become common in a few decades. At any rate, I'm not (yet) worried that we're going to see widespread brain experiments on those considered to have mental disorders. What is grossly insulting to me, and potentially terrifying, is the idea that Autism is a mental disorder in the first place.

Suppose for a moment that a device actually came into existence which could change a neurodivergent brain into a neurotypical person. Suppose that it saw widespread use. It might get to the point where it's use was expected by society if your child showed sings of being "different". It might even be mandated, out of compassion, by neurotypical people who have no knowledge of what it is like to actually be different. The only way to combat this dystopian future is to make society realize, once and for all, that what we're talking about is not a disorder. It often presents itself with other traits that can lead to a lot of difficulty in life, and I'm not arguing that at all. But even if a person's Autism is manifesting in all of the most negative (from a societal viewpoint) ways it's still something that is just too tied to self to separate from a person.

There was a time when being neurodivergent would have been a handicap. When we lived in small villages where everyone relied on everyone else doing their part then any inability to meet expectations would have led to those genes self selecting themselves out of the gene pool. Those conditions haven't existed since we rose above a primitive hunter-gatherer society.

As our society evolved, I'm sure that those genes became less of a handicap and so became more common. As I've experienced in my life, they can lead to some startlingly positive traits and abilities. I can't tell you how much of my intelligence comes from Autistic hyper-focus and how much doesn't, but it is something that I consider an enhanced ability and it certainly doesn't hurt my ability to learn.

My point is that it is high time we re-structure our societies in a way that accounts for and celebrates out differences. I am of course not speaking of my own personal differences exclusively. It's well established that diverse groups are better able to serve the needs of their audience, be that in business, government or artistic endeavors. Being Middle Eastern or Black should not have any particular effect on a person's potential, yet it does. Being neurodivergent also should not affect a person's potential, but being socially wired the average normal person tends to get uncomfortable with the idea of elevating a person who is obviously wired differently. Deny it all you want, but it's true. These are things that society has to actively work to make better because they don't just happen on their own.

I'm getting on into middle age now and am well and truly tired of masking every day of my life. I am self aware enough to know that I can make people uncomfortable sometimes. The thing is, I want them to also be self aware enough to know that they make me infinitely more uncomfortable than I ever could make them. For that reason (and a lot of others) I don't particularly make any effort these days to hide myself anymore. In fact, since I have such strong feelings on the subject I WANT everyone around me to know that I'm not typical. I want them to get past their discomfort and see me, as a person with value and potential, and from my experience hiding myself is a piss poor way of getting from where we start to where I want things to go.

In short, I want the world to adapt to me. Yeah, that's a big ask. Thing is I've spent almost a half century being the one who is told to stop being weird and to stop drawing attention to myself, whether it's intentional or not. It's too much to ask and doesn't actually work anyway. Better if society just gets used to the existence of the different, gets over it, and moves on. If we can do that then we can move forward. If not, then whether or not we get dystopia depends on who you are, because for a lot of us the current social order -is- a dystopia.

Neuralink and Autism

2023-05-31

I am NOT disabled

It's terrifying that the world still views Autism as a disorder

I don't want to adapt to the world and I shouldn't have to

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