Is nihilism is the true core of 2A?

 

I just saw this video because a Facebook friend posted it. It shows a world in which everyone carries a gun, where trifling disputes end in everyone pointing weapons at everyone else. And at the end, someone’s gun accidentally fires, which results in a bystander getting wounded. The others say this is “the price of freedom”. Obviously this is supposed to be funny, but I couldn’t quite laugh at it, and a little thinking got me to the reason why.

I’ve noticed before that after every school shooting, I can’t bring myself to feel angry at the shooter. It’s not that I like violence or anything of that nature, it’s more that growing up, I had quite a few behavioral issues that, had I not overcome them, could have led to me “snapping” in this sort of way. So I feel a great deal of empathy for the shooters.

Yes, I feel empathy for the victims, too, but my capacity to empathize with them is very much strained by the hateful comments I hear from the victims and their allies about the shooters, and about people with mental illness in general (or at least, people who could be considered to have one). This “villainizing thinking” erodes my sympathy for the victims, yet the shooters rarely villainize the victims after the event is over, no matter how angry they were when they snapped.

Also, there’s sometimes talk of how the souls of the dead are begging us to do something about what happened, and part of me says “how do you know that?” Even if you could prove there are such things as souls, you don’t know that wherever they are they even care.

On the other hand, if I follow my “gut feeling” to its conclusion, then you ultimately get to a situation where someone with a mental health issue (due to something like PANS, Lyme, or whatever) can never be blamed for anything. And of course I don’t want a world where the state has total control over such people, and can lock them up whenever it feels like, can monitor their every move, etc. So putting these together logically, you arrive at a world where when someone with mental health issues harms or even kills people, the official response to the survivors, the families, etc., is “Well, I’m sorry for what happened to you, but that’s just the price of living in a world where people can ‘snap'”.

It would be a sort of “mental socialism”, where everyone has to equally bear the brunt of everyone’s mental issues, yet nobody has any real power to do anything about it. And in fact, like the guy without a gun being blamed in the video, the blame for something like a school shooting might be placed on someone we would consider “healthy”, for provoking the person. It would be a world where everyone is always walking on eggshells, yet uncritically accepts this and never does anything about it.

And the weird thing is, on a raw emotional level the idea of such a world actually feels kind of normal and acceptable to me. I’ve even wondered before if I could be a psychopath because of this, but I’ve heard that actual psychopaths don’t ask themselves if they are one. I think it’s more that being 2A, I’ve been emotionally isolated from others so much of my life that I never developed the same emotional responses that others have to things. This is further amplified by the KBS-like way that neuro-immune issues show up in people like us.

Even when I’m not particularly anxious or even depressed, this “blankness” is still there. And it’s not total absence of any meaning–things like the beauty of the universe and nature hold deep significance for me. It’s just that within the world of people, I feel there is this void there, that never completely goes away even when my PANS symptoms are at there mildest, and even when I’m the most motivated in my own life. I’m wondering if any others feel the same way.

 

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I need a chronic illness Skype/video chat group

I’m not a person who likes written text. Not when it comes to providing emotional support–for reading scientific results and the news it’s fine (though even in science I’m a very visual person). Despite being on the spectrum and missing a lot of cues, I’m an intuitive person, who “resonates” with certain people and not others.

I have a recurring experience in chronic illness-related Facebook groups and the like. I’ll exchange a bunch of messages with someone, and then ask if they are willing to video chat somehow. That’s about when most people stop responding.

I think part of it is that people compartmentalize their lives. Quite a few have full “real life lives” even despite their illness, and then come to chronic illness groups and start acting like walking illnesses that just happen to have people attached to them. Whereas I’m there primarily for a completely different reason. I’m there for human connection with someone who understands what it’s like to have over a decade of one’s formative years “stolen” from you. I’m looking for a connection that, even if it’s with someone on the other side of the world, might become closer than any connection I have with anyone in real life, because that person “gets it”. And to feel that, I need more than words on a page.

I’m looking for people who will actually “be there” with and for me–not as some kind of case studies in chronic illness like in a doctor’s office, but as actual, rounded human beings. Human beings who have seen their old friends grow up, progress in their careers, and in some cases get married or even have children, while they are still living at home with parents or trying time after time to finish college. People who “dropped out of life” for years at a time, but are still searching for meaning. People who at times feel so “invisible” in the world of healthy people, their “real life lives” are mostly devoid of emotional sustenance, and so are happy to pursue something close to friendship with people who are in the same boat, by whatever medium is necessary, even if it’s a bit awkward at first.

Some things have changed, others stay the same

Early last winter, I made an important discovery. My body seems like it almost certainly had a severe difficulty converting tryptophan to serotonin, which had profound effects on my gastrointestinal function and my emotional/cognitive functioning. I am now taking 5-HTP, which is more readily converted to serotonin, and within less than a day after starting it, I already noticed significant changes, in particular my attention span dramatically lengthened.

When reading, I used to have to get up and pace around every few minutes, almost couldn’t focus on something without having music playing, and was perpetually antsy. I have realized that this was contributing significantly to some of the difficulties I’ve had in my academic program. I have always had lots of ideas, but never got much concretely accomplished. I attributed this to my thinking style and personality, that I’m creative and imaginative and have never liked mundane activities. I also attributed it in part to all the things I am frustrated about in my life, i.e. when there feels like so much missing, I don’t have the patience doing drudgery.

However, back in high school I used to be able to spend significant periods of time reading things for classes like history and English that I wasn’t interested in. Now I have gotten closer to that again–at least on good days I can really focus. I’ve been doing a research project this semester that required WAY more organizational skills and focus than anything I’ve done before, and yet I made it without too much difficulty.

I’ve also noticed that my gut doesn’t feel “stuck” like it always used to. After eating, it gurgles softly, it doesn’t feel like there’s a lump just sitting there. Also, I had developed a HUGE appetite for protein over the years, and now I have days where that is much less extreme. Now I can get by eating smaller meals a lot of the time, which also gives my gut more of a rest in between.

I also have significantly fewer moments where I feel incredibly bitter about my life out of nowhere, to the extent that it prevents me from getting anything done. However–and here’s where we start to get into what has NOT changed–a lot of the same things in my life that have been missing are still missing. I still feel like the only kid among adults a lot of the time. I still wonder when I will ever meet a girl who is at a similar stage of interpersonal development as I am, who has a similar level of (in)experience and is as impatiently and eagerly awaiting me as I am looking for her.

On the more health-related side, my food sensitivities aren’t much better either. I’m still stuck eating the same ~5-6 things over and over, and of the two foods I started reacting to last fall, I’ve only partly lost sensitivity to one–I’m in fact MORE sensitive to the other now. So I still can only eat at home or bring food with me–it would be hopeless to eat in a restaurant/cafe. I’m hoping some of this will improve over time, but I don’t know if it will.

Also, a big life change is coming up. I’m hoping it will get my life more on track and not more off, but I’m not sure.

The Facebook PDA group

After some conversation with the leader of the Facebook PDA group, I have decided to edit this post to be fairer to them, because I was jumping to some conclusions that were not entirely accurate. Anyway, this is to discuss my experiences with the concept of pathological demand avoidance (PDA).

What still stands is that the “PDA community” (likely as a whole, although the Facebook group “Adult PDA Support Network” is my only contact with them as people) consists primarily of people who don’t meet the criteria for autism or Asperger syndrome, even though many people with autism or AS deal with the same sorts of issues. In other words, there are people (let’s call them “Group 1”) who have demand avoidance issues, “Group 2” who have classical aspie tendencies but NO demand avoidance, and “Group 3” who have both. The “PDA community” is largely Group 1, who somehow consider Group 3 “less PDA” even if some members of Group 3 have more difficulties with the same issues because they’re compounded by being aspie.

This is, in a way, “baked” into the definition of PDA, where some symptoms are literally the absence of autistic symptoms. Like, “focused on people rather than objects” appears on several PDA diagnostic checklists. This isn’t a “symptom”, in that completely neurotypical people tend to be focused more on other people than objects, it’s a “default”.

Making an analogy to the subject of this blog, it’s like if autistic people with Lyme were considered “less Lyme-y” than people with just Lyme, because “having Lyme” were defined as “having a tick-borne disease from a spirochete but tending to have normal social skills”. There’s really no reason for the “tending to have normal social skills” (even if most infected with the spirochete DO) other than to create an artificial boundary.

In practice, as I’ve said in the first post of this blog, most people in the Lyme community do in fact not have autism, and most autistic people don’t show signs of Lyme, which can lead one to experience feeling left out in either community when having both. However, I haven’t experienced Lyme patients being actively critical of those among them who also have an ASD the way I have seen among PDAers. Yet at the same time, while there IS a group that thinks Lyme causes autism, I haven’t seen people with Lyme as a whole insist they are on the spectrum.

In the PDA community, I have seen it stated that aspies are hard to understand, hard to get along with, too intellectually arrogant, sometimes creepy, etc. Yet at the same time they insist they (the PDAers themselves) are “as much a part of the autism spectrum” as Asperger syndrome. In other words, they do much of the same “othering” as neurotypicals due to aspies, while also considering themselves closer to autistic than neurotypical.

I have in no way been convinced by this experience that the PDA-like traits that some of us aspies experience are any less real, or that we can’t work on them just the way “genuine” PDAers would, but rather that PDA groups are not where we need to be going for validation on this.

 

 

Explaining 2A through popular references

While most of my other posts are directed at people who are 2A themselves, and therefore “get it”, this one will try to explain it in terms that both “1A” and “normal” people can get. I’m doing this because I’m intending to soon post about some things that have helped me lately, treatment-wise, but before I do that I want to be clear about who this probably applies to. Though that post will be positive in tone, this one will be somewhat of a rant at times.

As I’ve said before, part of being 2A is being on the autism spectrum. And by this, I mean “classically” so. I feel that one of the negative effects of autism awareness is that the meaning of “autism” has been blurred in some circles into a general descriptor for “something is wrong with this person cognitively/developmentally that we can’t call anything else”, especially when referring to children. In many of these cases, there is no indication at all that their primary impairment is in the social domain. Just because some autistics have cognitive difficulties in other domains as well doesn’t mean “autism” is ill-defined.

A good way to comprehend being on the spectrum is to think of Sheldon Cooper on The Big Bang Theory, or Amy Farrah Fowler from the same show if you’re talking about a woman. It doesn’t mean you study astrophysics, or have awkwardness to the comically extreme extent he does. Also, he is very “flat” and unemotional, and I am not that way. I personally fit the “artist-scientist” Jungian archetype very closely, while he comes across more as a stereotype of the stoic, dispassionate scientist, even though he fits some of the traits of the artist-scientist (like “An inner childlike emotional side intertwined with a staggering logical mind”) to a T. But the general profile, the way the world of people is cryptic to him while the world of ideas is transparent–that’s what you want to picture in your mind when I refer to “autism”. This is important because as I said, I often feel that the word has been “stolen” to refer to something very different.

Now, Sheldon doesn’t come across as having PANS, and neither does Amy. A lot of this is because of the stoicism and even-temperedness I mentioned above. I just read a great post from someone else, that’s the best description of PANS I have read. As I mentioned in my first post on here, and as I’ve only seen acknowledged in this one blog post, “it’s not just about the symptoms”: https://thedreamingpanda.com/2018/01/10/not-about-symptoms-the-truth-on-pans-lyme-recovery/ The most significant part is psychological/psychiatric. And when you add that to a “Sheldon/Amy”, you get a whole bunch of issues that aren’t there for real-life Sheldons and Amys. In short, you go from a misfit geek to a “tortured genius”. That’s the essence of what this blog is about.

The cognitive profile is still there, and so is the misfit-ness, which is in fact greatly amplified. There is the tendency to ask oneself whether the emotional torture of PANS is just the inevitable curse of being an intellectual, of being trapped in a society that doesn’t think like you. Also, the turmoil of PANS makes it much harder to focus in research, and one can get stuck in an endless maze of theorizing while veering more and more from what actually concretely needs to get done. It becomes easy to attribute this to “I’m creative and misunderstood” and “All anyone wants is busy work!” Plus, any “intellectual ego” now has to do the “double duty” of not only explaining why one was writing equations alone while other kids were playing together at recess, but also why one is destined to feel so depressed and tormented as an adult. Suddenly, the excesses of self-centeredness that Sheldon displays on the show, which otherwise seem comically over-the-top, no longer seem quite so farfetched.

These issues account for 95% of what I’m dealing with on a daily basis. As “The Dreaming Panda” says in that blog post, it’s not primarily about the physical symptoms. But these kinds of things are never even touched on in most online PANS groups. Almost nobody in those groups fits the Sheldon/Amy profile, and probably never will, with PANS or without. When they are not in a flare, they have “normal” friends, ordinary jobs, etc. (and they had those before getting sick)–they don’t have that second layer of isolation to overcome. That’s probably why there’s so much talk of “recovery” and “survivors” in those groups.

While the push to recognize “atypical autism” may be well-intentioned, like many diversity movements, if not done carefully it risks marginalizing new groups. In this case, it makes it sound like an “OR” question, i.e. one has a Sheldon/Amy type profile OR something completely different. Whereas for us 2A people, it’s an AND–our basic profile is Sheldon/Amy, but we also have emotional (and physical) challenges they don’t. The interaction between the two is such that even if our symptoms aren’t THAT bad, and even if we’re not THAT awkward, the two together add up to a huge wall to climb.

It may help sympathy for PANS in the short run to show otherwise “normal” people who have the syndrome, as opposed to the snickering that it may get if it had nicknames like “Van Gogh’s disease” or “Tortured intellectual syndrome”. But that does little to make us 2A people feel less alone.

I’ve noticed that in the PANS/Lyme world, unlike in the autism world, there is little tendency to “diagnose” historical figures, literary characters, etc. I remember that shortly after being diagnosed with Lyme, I thought back to the book Of Mice and Men that I’d read in middle school. I imagined that Lennie may have had neurological Lyme from spending so much time in the fields, and that’s why he couldn’t fit into society. I also wonder how many of the artists/intellectuals from history who are known as “tortured souls” nowadays had something like PANS. But as I say, I’ve never seen these kinds of speculations in PANS/Lyme groups, possibly because people in those groups don’t see themselves as “outsiders” with the need to identify with someone.

So any other people out there who are like “I feel like Sheldon or Amy, just much more moody and emotionally tormented”, please realize you’re not alone, and let’s do our best to form a community.

What would a “PANS-normal” world look like? Part 1

Being a person who appreciates and honors neurodiversity, my first response to any disagreement with neurotypical people is to ask myself, “what would the world look like if this was normal?”, where “this” relates to some autistic or PANDAS tendency. And when I say “normal”, I mean that it would be true of a large enough fraction of the population that those from whom it’s NOT true would be forced to “live with it”, because the society would find nothing wrong with it.

For this post, the trait I am going to “analyze” is a tendency to get upset and throw tantrums even as an adult. Like, as an example, this viral video: https://www.youtube.com/watch?v=lnkMHIrH1RA. A significant part of me would LOVE to see a world where that is the norm–where presidents routinely are shown on television acting like this in meetings with each other, where there are so few individuals on Earth who are “above” acting this way that they are insignificant in the global scheme of things.

In such a world, there would probably be a law that an airline cannot cancel a flight even if it’s certain that the passengers will die because of poor weather. Possibly, though, they would have to inform the passengers that they could die, because someone could throw a tantrum over the fact that he/she wasn’t told that he/she could die (or his/her friend wasn’t told that).

Though I suppose that possibly asking what the law would be in such a world is somewhat beside the point, as it’s an open question whether any form of law enforcement would exist in such a world. Possibly, they would be discouraged by the fact that if they tried to make an arrest, a group of people opposed to the law on the basis of which the arrest was being made might “jump” the officers, sinking their teeth into the officers’ jugular veins to the point where those officers would be mortally wounded by the time they made it to the “station”. In fact, who says that the officers, themselves, would agree among themselves? Potentially, the bigger threat would be them never knowing when their supposed “allies” would turn on them, using whatever weapons people of their kind were given against them.

For a libertarian like myself, one who has at times leaned anarchist, this would be in many ways a dream come true. A world that collectively says “leaders, schmeaders”, and admits no form of authority. It would be the ultimate rule of anomie. This would be, in many ways, incredibly comforting. There would be no “cultural signposts” to place missing a Disney cruise above dying, except for the intellectual awareness that as long as one is alive, on could go on such a cruise, whereas once dead, one couldn’t (I’m ignoring life after death here–I apologize to those with beliefs in that, who might consider even this an undecidable question open to interpretation). On the other hand, it’s possible that this world wouldn’t punish the things that we find unacceptable (force and fraud).

This would be a great premise for a movie, in which there’s a city the size of (for example) New York that lives according to this philosophy, and a disagreement results in a giant melee spreading through the streets in a propagating wave of pummeling, like a Sprice domino video with people falling instead of dominos. Of course, the nerds (including 2A folks) would be in their rooms writing equations to predict the spreading of the melee and wouldn’t enter the streets until everyone else had beaten each other up. Not that they wouldn’t potentially start their own brawl later, but at least they would use logic and not some blind adherence to some socially agreed-upon idea of who is right.

But yeah, this is the kind of thing a 2A person thinks about. I’m curious what others think the outcome of this would be.

Different kinds of obsessions

The word “obsession” can mean a lot of things. Someone who checks a door lock ten times after leaving the house, a kid who is very much into trains and only wants to talk about that to the exclusion of other topics, and someone who feels repeated violent impulses toward a certain politician, all may be described as “obsessed”, but they are quite different things. What’s in common is something that’s relatively fixed and unchanging, but the underlying driver can be quite different.

For one thing, you have the intense interests that often occur in people on the autism spectrum. This includes the kid who is very much into trains, the girl who has a huge collection of rare and unusual dolls, the scientist who knows everything about his field and little about much else, etc. These are driven primarily by fascination, by an attraction to the beauty of the web of connected ideas and facts that permeate a subject.

Another kind of obsession is a phobia. Not every phobia becomes obsessive–whether it does or doesn’t depends on how common the subject of the phobia is and how “stuck” a mental state someone is in. For instance, being intensely afraid of spiders is in itself not obsessive, but avoiding sitting down anywhere outside for fear that a spider may crawl over almost certainly would be, especially if it’s been years since one has seen a spider. From what I know, phobias are common in people with either PANS or autism, and so the combination can make them particularly intense. Paranoia is close in “spirit” to phobias, so I include it here, but it is usually reserved for fears of something that involves covert acts of other people or other sentient beings of some kind.

Then there are OCD-type obsessions, like checking door locks over and over, having fears of self-harm, having to repeat certain numbers, etc. As I understand it, these are somewhat like phobias in that they are driven by fear, but the difference is that the feared negative outcome is usually significantly more abstract in OCD-type obsessions than in phobias, which generally relate to some tangible negative outcome of physical injury or severe discomfort. A spider phobia may be driven by the possibility of a bite or the feeling of tiny legs walking on the skin, a phobia regarding heights may be related to the possibility of falling, emetophobia (fear of vomiting) relates to an experience people find very unpleasant, etc.

Whereas, something like “fearing” multiples of three is hard to link to any concrete negative outcome. Something like handwashing seems closely linked to a phobia of germs, but many other “contamination” fears in OCD seem to be linked to a more metaphorical kind of contamination, the kind that holy water is meant to rinse off. And, many of the most common subjects of phobias (insects/arachnids, other animals, “unsafe-looking” places like elevated, open, or confined spaces) barely seem to feature in the OCD literature at all.

Now, there are cases where more than one of these can have a similar subject. For instance, there is a large fire alarm community on YouTube, of people who can recognize different models of alarm by the sound, who collect them, etc (for instance, see this channel). They can be fascinating in all the sounds they can make, the control panels with lots of lights and buttons, etc. But being sometimes startlingly loud and obnoxious, they’re a common phobia subject as well. The same attention-getting quality is likely responsible for the prevalence of both of these.

Then you have someone like John Nash in A Beautiful Mind, who had curiosity-driven obsessions with what he referred to as the “underlying dynamics” of birds outside the window, games, markets, etc., as well as phobic, paranoid-type obsessions with a variety of other things. That’s a case where one person had two types of obsessiveness, about different subjects in each case.

In terms of autism/PANS/2A, the first type of interest-driven “obsessions” is very common in autism, whereas I’ve never heard of a neurotypical PANSy who was like that. The OCD type occurs in autism to some degree, but is super-common in PANS. I don’t know how much that has to do with how PANS is defined, but there’s definitely a “cluster” of people who have chronic illness and primarily these symptoms. The phobic type is common in both, and therefore I suspect it may be especially common in 2A people.