PANS with and without ASD

I wanted to write a post describing, in my (albeit limited and mostly second-hand) experience, how PPL presents differently in neurotypicals and people on the autism spectrum. This will hopefully help people with PPL alone (i.e. neurotypical “PANSies”, as I like to call them) understand people with both differences, and for “twice apart” people who know they’re autistic but DON’T know they have PPL to discover why they are the way they are.

The differences, as I see them, can be summed up in the following: Neurotypical people with PPL (or any immune disorder that affects personality/emotion, really) present with more anxiety, tics, and confusion (including cognitive deficits), while autistic people present with more irritability, aggression, and withdrawal. Both present with what could be called “obsession”, but that is predominantly of a quite different type–a later post will address this point in more detail but I’m trying to keep this one on topic.

I don’t mean to say that neurotypical people with PANS never have irritability or aggression, and/or that autistic people with PANS never have anxiety, but these generally emerge farther up the “severity scale” in the populations where they are less characteristic than in the populations where they are more characteristic. In other words, it’s comparatively difficult to find a neurotypical “PANSy” who is irritable and aggressive WITHOUT anxiety, tics, and/or cognitive deterioration, or an autistic PANSy who has anxiety and tics WITHOUT irritability and/or aggression. The order in which these become key issues is different.

A decent amount of this relates to the tendency to connect with other people. PANS-type conditions change one’s internal emotional state, but another source of reference is other people. If a person establishes a two-way connection of empathy with one or more other people in the first five or so years of life, this can serve as a “landmark” as to his or her own level of emotional functioning. Conversely, if this doesn’t happen, there is no “landmark” or “yardstick” available.

Especially for a young autistic child, there is no outside guidepost for emotional reactions. There is little appreciation that others may respond differently to the same world. If we’re talking about someone who had PANS from 2 or 3 years old, then forget about it! Such a child has no frame of reference, and absolutely no way to appreciate the impact his or her behavior has on other people. None. Nada. Even as a young adult, there are likely ways in which I don’t understand how I come across to others when I’m in a flare.

Whereas, a non-trivial number of neurotypical PANS kids will actually realize that they are not “normal”, that they are behaving in a way that upsets those around them, and that this isn’t purely or even mainly the fault of those around them. Not in the middle of a flare–to use a concept from another website, this is like trying to explain an to an alcoholic his/her drinking problem when he/she is drunk–but at relatively low levels of functioning. When they are out of a flare, even for a short time, they will rebuild their relationships with others around them, including parents, peers, etc. Whereas for those on the spectrum, this is something that takes effort to learn, and will never happen except if these people are either flare-free for long periods, or else if they have friends who are in the same position they are (who will accept them as they are).

To use an analogy, think of your sense of balance. If you spin around on a merry-go-round for a while, or play that game where you run in circles with your forehead on a baseball bat (we used to call that “dizzy bats” as kids), then you will feel like you are spinning. But if you have your eyes open, you will still be able to judge which way is “up”, and quite possibly can stay upright. Similarly, you can walk upright with your eyes closed, if you aren’t dizzy. But if you are dizzy AND have your eyes closed, you may truly not know which way is up.

In this analogy, 2A kids (those with ASD AND PPL) have no reference which way is up emotionally. To them, the world is spinning, period, and they will beat up and terrorize the world until it stops spinning. Trying to tell them that they are dizzy will only reinforce their certainty that it’s the world that is spinning, and the other kids, who don’t feel they are spinning, will only exacerbate the problem by trying to tell the 2A kid this. To the 2A kid, others don’t understand, and in fact they don’t.

Back to the neurotypical PANS kids’ symptoms, if we’re talking about anxiety, the autistic PANS kids may have situational anxiety, in other words about doctor visits, traveling, etc. But chronic anxiety as a trait–if this develops, is likely what (if I remember correctly) Freud called “neurotic anxiety”, i.e. the feeling that they will be punished in some way for not behaving “acceptably”. In other words, the strange (and to others “challenging”) behavior comes first, THEN the anxiety. Whereas neurotypical PANSies will sometimes (possibly even typically) have more insight into their own relationships to others, and may express fear/concern about what is happening to them.

Meanwhile (it seems), neurotypical PANSies have more “fragile” cognitive skills. A neurotypical PANSy may do awfully on a test at school, yet still be able to make friends. Whereas and autistic PANSy may do well on the test, but not have a single friend. And, neurotypical NON-PANSies, as well as even autistic non-PANSies, may feel justified in rejecting the autistic PANSy as a friend, thinking that he/she will “drag them down” or is some sort of threat due to his/her outbursts. However, it is especially important that any autistic get practice connecting with others, so this is unfortunate. Hopefully this blog will prompt some changes that help this situation improve.

 

A quick research paper

Because this relates to what I was describing in the last post, I just wanted to post this here:

https://www.ncbi.nlm.nih.gov/pubmed/25344730

I posted it on a Facebook group and people seem to like it. The following are all things I got from this paper:

1.There is a subtype of ASD with fluctuating symptoms in response to infections, that has a different clinical picture from other ASD cases, and that has large overlap with PANS.
2. These ASD children often have food allergies, but these are *neither* classical IgE-mediated allergies (the kind that show up on scratch tests and RAST blood tests) nor the supposed “IgG reactions” that, although mostly debunked, are used by some alternative practitioners to explain away allergies that don’t show up on those other tests. They are a well-recognized, clinically separate condition called non-IgE-mediated food allergy (NFA).
3. This ASD subtype has a distinct profile of how the white blood cells in drawn blood react to stimuli that mimic infection, different from other types of ASD as well as from neurotypical controls.
4. There are also differences in the magnitude of this effect corresponding to whether the patients are in a “flare” of their symptoms or not.
5. They also tested PANS alone (without ASD), and found that PANS + ASD white cells reacted differently from PANS-alone white cells, which were nevertheless still different from non-PANS controls.

It seems from the error bars that some of the differences they have observed in the blood are not too striking, but still, it’s nice to see that someone has noticed and is looking into these things.

 

Are there multiple “autisms”?

It seems that depending on the “crowd” you’re in, the meaning of “autism” differs greatly. In one kind of crowd, it means someone who can do reading, math, or whatever beyond his/her chronological age, and maybe loves building train sets or whatever, but at the same time has no friends and doesn’t know how to make them. In another setting, it means someone who is in his/her room screaming, who never can get comfortable and whose eyes are glazed over. Yet another view is of someone who cannot get along with others, who throws tantrums, kicks others or pulls their hair, and isn’t “socializable” into the usual rules of human behavior. Another is someone who is intellectually and/or linguistically impaired, will never learn to walk and talk and possibly to even tie his or her shoes.

I imagine that in light of all these differences, it’s difficult for an “outsider” to even get an accurate idea of what autism IS. It also leads to a lot of “infighting” among family members of autistic people, or even among autistic people themselves. But since I’ve seen various “sides” of this condition over my life, I am hopefully able to shine some light on these things.

I myself, and it seems most professionals in the field, think of the “core” of autism as deficits in social learning, strong and often atypical interests, and repetitive behaviors, with the first two being more crucial (as the third is also associated with other neurological/mental conditions). The social deficits may or may not include lack of a desire to connect socially–but in my case this lack was almost absolute until my mid-teenage years. The atypical interests are often associated with skills that are unusually pronounced relative to someone’s level of functioning otherwise, and sometimes unusual relative to the population at large. This is where Temple Grandin’s understanding of animals fits in, or Jacob Barnett’s understanding of physics.

Aside from this, a person’s overall level of functioning can be anywhere along a wide continuum, just like someone who is neurotypical. However, because intellectual ability in autism is allocated in a quite non-uniform and unusual way, this leads sometimes to difficulty assessing this overall ability. If one of the relative weaknesses is in communication, someone can SEEM more mentally impaired than he/she is. If you read about Jacob Barnett’s early life, you will see that this was very much the case for him as a young child.

Along with these core traits that in some form HAVE to be there, there is also increased proneness to other things. One is sensory issues, which may involve being hyper- or hypo-sensory. Hyper-sensory people are bothered when there are multiple sensations coming in at once, or even just one or a few sensations, such that (in my understanding) the everyday world feels to them like the “average” person would feel in a large city with lots of people honking their horns, pedestrians almost walking into them, etc. Hypo-sensory people crave sensory input, (at least in my case) because they don’t feel “in their body”, it’s like they’re floating in space and stimuli “ground them” by replacing the “missing” proprioception that neurotypicals experience in adequate amounts. It’s possible to have some of both, for instance to be hypersensitive to things like some types of pain and tickling but hyposensory with regard to pressure and general body sense.

Another proneness, that goes along with the “repetitive behaviors” aspect and to some extent the strong and specific interests, is tending toward habit and being inflexible. The autistic brain tends to take a fixed perspective and try and “connect” that TO reality, while the neurotypical brain seems to start with reality and build a mental outlook FROM that. This should not be confused with the closed-mindedness of “backwards”, bigoted people; while neurotypical closed-minded people tend to have views that align with some sort of “majority” (not necessarily THE majority, but a group), in many cases “behavior problems” in autistic children result from their fixed perspectives clashing head-on with basic social norms.

The final proneness is toward aggression/tantrums. But while the “core” of weaker social skills relative to other skills and strong interests is usually relatively consistent over the life of someone on the spectrum, and sensory issues are as well (though those can be “desensitized” to some degree), aggression fluctuates. In some people it can be triggered by sensory issues–in these people it “goes away” when they are moved to a calmer environment. The difficulty adapting has a major role to play in aggression, as well. But this is really where conditions like PPL seem to have the largest influence.

PPL act, in some sense, like an ever-present sensory issue. Unlike a “true” sensory issue, though, they act inside the body, altering sensations en route from the sense organs and skin receptors to the brain, and can even affect the communication within the brain. This means that they cannot be compensated for by environmental accommodations, or behavioral changes (except when behavioral changes reduce the illness process itself, for example avoiding certain foods that cause allergic reactions), and can induce emotional states that are “impossible” otherwise, by modifying emotions as the brain is in the process of “creating” them.

Now, similar chronic illnesses can and do have similar effects in neurotypical people. But, aside from neurotypical people possibly being able to better fight these illnesses to begin with, their other traits allow better compensation. Their brains are generally more flexible and adaptable, so it takes more disruption to produce rigidity to the same degree. Their greater ability to communicate with others also gives them a second frame of reference that seems to reduce how much their emotional world can be “knocked out of whack” by the effects of the illness.

Note that the level of aggression and/or behavioral disturbance does NOT necessarily correlate with high functioning vs. low functioning. I know of “low functioning” people who are/were just withdrawn, not disruptive, and certainly not prone to the irascible rage I was as a young child, as well as many high-functioning people who weren’t, and low-functioning people who did have these emotional issues.

So while it seems like there are multiple “types” of autism, I think there is just autism (which is itself a spectrum), communication difficulties that make it hard to see clearly where a person is “at”, and other issues that interact WITH autism to further impair social-emotional learning. And then there’s a labeling problem, where “autism” is sometimes used as a label for “something’s wrong with this person that we don’t understand”.

The meaning of immaturity

My previous post was all about how I feel that due to a combination of being on the spectrum and “losing” years to Lyme-related stuff, I feel that my romantic self is significantly less “mature” than that of most people my age. And in many ways I feel “emotionally younger” than even many people ten years younger than me in actual years.

On the other hand, at the same time I feel very different from most other people who might be labeled as “immature”. Those people can’t have a deep conversation, don’t have real meaningful interests or hobbies, and usually are judgmental in ways that make it difficult for even a “normal” person to get along with them, let alone a 2A person. The weekly karaoke night at my university is organized by such a person. He’s a gay guy who COULD be one of the nicest people you’ve ever met, if he weren’t “normaler than normal” in many other ways and quite immature. When he’s not singing karaoke, he seems like a very “fake” person–even though he’s nice to everyone, I don’t feel like I know him at all, and it’s not that I don’t care to.

My mom recently told me this story about when I was younger, I think in 6th grade. She was one of the parents who came along on a field trip, and we kids were asked to each pick a “buddy” to stick with so we’d be easier to manage than if everyone were walking alone. When asked who I wanted to be my buddy, I said “I don’t care”. One of the other parents who heard this said to my mom, “Wow, he is mature”. She saw it as a sign of maturity that I wasn’t “playing favorites”. But my mom knew that, if anything, it was a sign of IMmaturity because I didn’t have the social awareness to form opinions about people.

This illustrates well how “maturity” is always relative to some context and developmental path–it’s not an absolute quantity. Most kids have a need to be liked by others from a young age, and learn quickly to “wear some sort of mask” to achieve this. Whereas, I had no such need at the time. This had good and bad points. The good points were that I was a very genuine person who was impervious to peer pressure and didn’t engage in exclusion of unpopular people no matter how far down the social ladder they were. On the other hand, I didn’t learn to socialize when others were still learning as well, and also didn’t get the feedback that could have fostered some “good conformity”. By that I mean, there are certain behavioral traits that make it hard to get along with others, and it’s likely there are some of those I didn’t unlearn because of the lack of feedback.

One of the things that others seem to find immature about me is that I have a tendency to blame the world for working the way it does, and to sometimes demand that it change even in instances where others might find that foolish or counterproductive. They, instead, change their own expectations of the world and learn to work with rather than against it. It’s a tendency that I’m aware of, but even so, it’s VERY hard to change, not only because it’s a habit since I was a child, but also because Lyme/PANS makes my stubborn streak like 100x worse. Sometimes, if the inflammation sets in fast enough, I can almost feel my brain “locking”–and in those instances, even if I’m aware of it, getting out of this thought pattern is essentially impossible. And it’s also really hard to see the sometimes fine line separating things about the world that actually are blameworthy and should change, and things that I’d be better just accepting–in other words I’m less able to “pick my battles”.

Aside from this social awareness piece, I feel like I haven’t gone through the typical emotional calming or “sobering” process that most young adults go through. The upside of this is that I can be more creative, have more ideas, and feel often more energetic than others my age, even despite a chronic illness (though it’s a “fidgety”, fits-and-starts kind of energy, not a sustained, productive one). The downside is that I have a hard time staying focused on what needs to get done. Another consequence is that in friendships/relationships I need either someone like me, who also retains that “childlike energy” and isn’t looking to settle down, or else someone very calm who can ground me and doesn’t mind my hyperness and instability.

Finally, there’s another sense of “childlike” that has no positive side and that has entirely to do with my illness, and that is the fact that more a large part of my adulthood I’ve been much less independent and felt less capable than others my age in almost every way except my intellect. This is definitely something I’d like to change.

 

 

Experiences vs. development

Given my lack of friends in elementary and middle school, and my lack of dating in high school and college, I feel like what I look for in a relationship is something fundamentally different from others my age. And I often think I could never be truly happy in a relationship with someone who is typically developing, who wants what could be termed a “serious adult relationship”.

Sometimes other people–and myself sometimes–look at this as “I’d only be willing to date a virgin”. And they tell me that I should give up that requirement, as it often seems that even almost every woman with PANS/PANDAS/Lyme (PPL) has had some sort of sexual experience. But the word “virgin” puts a simple label on a much more complex developmental issue. There is no one simple act that can be summed up in a single sentence, let alone a word, that provided a girl had not done it yet, that fact would be both necessary and sufficient for me to feel happy, comfortable, and not out of my depth dating her.

It much more has to do with overall developmental level, which is a synergy of umpteen little things. In PANS groups, I often see people talking about the issues they face with their long-term partners, and sometimes even about having enough energy to raise their kids. I’ve read about one who was facing serious philosophical issues around a pregnancy. Meanwhile, I’ve never had a girl I developed a crush on even kiss me. This is in many ways a completely different “level” of romantic development, and that’s the part that I believe I’d HAVE to share with a girl in order to have a truly satisfying relationship.

If I met a girl who was still waiting for the first time a boy she had a crush on was going to kiss her, it matters much less if she’d technically lost her virginity. I’m technically not a virgin myself–I did some things with some girls who I had absolutely no attraction toward whatsoever, just so that I could try them because the girls were willing. But that doesn’t change the fact that, by and large, I approach romantic relationships from the emotional frame of a teenager, or even a “tween” in some ways.

A woman who has dealt with issues such as moving in with a guy and having to share a household, deciding whether to come along or split when someone moved somewhere for a new job, or even the prospect of a pregnancy (wanted or unwanted), is likely to not care about my comparatively immature and childish musings about love. And even if she’s understanding, the relationship will feel very unequal, because I will feel like I have to grow up too fast to relate to her, and will always feel like I’m being “talked down to” in a way. I need a girl whose own musings about love are on the same plane as mine, which I’m thinking will likely be a 2A girl.

Many women are looking for guys who embody the idea of a “man”, but the girl who’s right for me will still be looking, in essence, for a boy–even if that “boy” is in his 30s, intelligent enough to get a PhD, and drives his own car. The difference is that she’s not looking for a future father for her children, or an emotional replacement for her parents–she’s looking for a playmate to sit under the sky looking at the stars, walk along streams looking for frogs, go down slides together at the park, etc. Someone curious and full of imagination, but possibly lacking in stability, and possibly nowhere near emotionally at a place to be able to take care of her, or to want her to take care of him. And she will be at a place in her development where that means more to her than just some kind of temporary distraction when serious relationships have left her hurt and broken.

A little more than a year ago, I had an experience with this woman who came to an illness group I’d started. I was open from the start about my “2A-ness” (even though I’d not yet coined that term) and lack of friendship and dating experience, and at first I thought she wasn’t interested in me at all. She never shared any “me too”-type stories when I told her about my experiences. But then she started wanting to hang out one on one. The first time she invited me to a movie, and firstly it was a very depressing and dark movie. For a first date, I would have much preferred a comedy or even a Disney movie. It’s not that I couldn’t watch something more sophisticated than a Disney movie, but I’m not into “dark” of any kind. But she wanted to hold my hand through the whole movie and got really “touchy” with my arm. I just wanted the movie to end.

Then on our next “date”, I invited her on a hike. I hadn’t planned it this way, but we ended up having to go down this steep hill where we almost had to slide. And as we were doing that, I playfully tried to flirt as I was touching her to help her down the hill. She seemed so un-receptive to this that I started to wonder if I had misread her touching me in the theater. Then we went to a bar and had some drinks while playing a board game (that was the best part of the night). Later, after inviting her home to my parents’ house for dinner, we walked through the back streets of town in the dark. I tried holding her hand, which she obviously enjoyed again. We started talking, and after some prompting from me, she told me about the hide-and-seek type games she used to play with her friends when she was younger.

I asked her whether she’d ever had a crush on any of the boys she played those games with. I was hoping to lead into a conversation where I could see whether I could fulfill the fantasies she’d had about her first crushes growing up. Instead she started telling me about her dad, how he’d been “the cool one” and had played along with the kids sometimes. I got this very strong vibe that she only wanted to compare me with her dad, not her former playmates, which weirded me out. I didn’t want to be some kind of father figure, and didn’t want to be treated as though I “didn’t belong” in her childhood fantasies (which indirectly implied that she didn’t belong in mine). When we got back to the car, we said goodbye, but it was awkward.

I fully intended, the next time we met, to have a brutally honest heart-to-heart about where each of us was in terms of dating experience and what we were looking for. But I never got the chance. After this she stopped returning my calls–I think she was disappointed I didn’t kiss her that night. At some point I looked on the Meetup page and, there among her interests, was “divorce support”. I don’t know if it was support for her parents’ divorce (I don’t even know if they were together or apart) or if SHE had actually been married before. If the latter, it totally explains why things played out how they did. So that’s a perfect illustration of what really matters–it’s not so much virginity or lack thereof (I had no way to know that about her yet at that point), but an overall “vibe” that comes across clear as day.

 

 

Explanation of the blog’s title (Part 2)

First I wanted to “correct” a possible misconception that readers could have gotten from Part 1. That is, one does not NEED to have the very high level of precocity of someone like Jacob Barnett to be “2A”. What is important is that a child who, instead of playing with other kids at the park, spends all his time writing symbols on the wall will be marginalized. Not necessarily in a deliberate way–it’s just that by adolescence/young adulthood, few people will have accumulated the same “catalog” of experiences that he did.

When you add something like PPL (PANS/PANDAS/Lyme–like illnesses, for those who didn’t read part 1), which is ALSO an experience that few people will have had, and that leads to marginalization even for otherwise “normal” people, then they add up to an even greater disparity in experience from what a typical person has gone through. And the whole is not just the sum of its parts–that’s the “intersectionality” bit. I.e., because someone with very unusual interests has, let’s say, a 7% chance of developing a particular “form of weirdness”, and someone with PPL has a 12% chance of developing the same, that doesn’t mean that someone with BOTH has a 19% chance–he or she might in fact have a 66% chance!

And it’s not just autism or giftedness that can act as the “second hit” in addition to PPL (and possibly, it’s not just PPL that can play ITS role, either, though I’m not familiar with the alternatives in that case). The role played by autism in the case of someone like Jacob Barnett could be just as well played in someone else by atypical gender identity (i.e. transgender) and/or non-conventional sexual orientation. The point is that most gifted/autistic/LGBT/etc. groups have nobody with PPL, and many if not most PPL groups may have no members with these other forms of difference/marginalization. This easily leads to the situation where someone feels totally alone. 

This is especially the case for even more truly marginalized traits, particularly sexualities such as zoophilia, or (dare I say it) pedophilia. Though I suspect that these “truly odd” tendencies are more likely to be the result of being 2A rather than one of the initial causes. But at a certain point, it becomes hard to distinguish causes from effects. It’s as though there is a “critical mass of weirdness”, or a “weirdness event horizon” if you will, where development gets sufficiently atypical that it becomes a positive feedback loop, where oddness begets more oddness.

It’s, of course, possible for ONE single condition to push someone over that “event horizon”. Like someone who regularly hallucinates that a talking rabbit is coming into his or her room and saying that he or she is a reincarnation of Jesus and can ascend to heaven by jumping out of his/her bedroom window. Or an autistic child who has never said a word. Or someone who has been too tired to get out of bed for the good part of a year, or even fell into a coma. But these are plainly obvious and easy to put one’s finger on. The concept of “twice apart” is that one can know people who are significantly more introverted, sicker, or otherwise “odder” in any one way, but who have less “aggregate oddness” overall, i.e. who have more reference points (e.g. experiences) in common with the average person.

It seems that one way in which this “threshold” or “event horizon” comes about is when people pass through a major life transition (especially adolescence) without ever feeling “normal”. Robert Bransfield once alluded to this in an article he wrote about aggression in Lyme:  http://www.angelfire.com/biz/romarkaraoke/Lymerage.html
He says: “When these changes occur in a mature adult, the patient is surprised by the symptoms – they recognize it is pathological and attempt to compensate for the deficitsHowever, children who never had the reference point of a mature level of functioning are at a greater risk.

In my case, I had aggression as a young child, then was treated and overcame it (but was still very much on the spectrum–as I said I was quite like Jacob Barnett), then developed Lyme symptoms in my teenage years and was an adult before I even started to significantly improve. So, quoting the above, I have “never had the reference point of a mature level of functioning”. Amazingly (to me), essentially nobody else in most PANS groups is in this position. The fact that many are married, and a decent number even have kids of their own, shows me that not ONLY do they not have the hopeless luck at dating that I’ve had, but they had at one point reached a mature enough level of functioning that they WANTED kids. That puts them, in my mind, clearly on the “normal side” of the event horizon. I.e., with whatever energy that remains after their PPL symptoms, they do normal adult things and have normal adult experiences.

The whole point of this blog was to meet others in this group of “never-been-truly-normals”. ESPECIALLY women. I feel I have accumulated an extensive amount of misogyny due to resentment/jealousy about things that really may have nothing to do with people being women, and much more to do with the fact that they aren’t 2A and HAVE had this reference point of mature, “normal” function.

 

 

 

 

Explanation of the blog’s title (Part 1)

The term “twice apart” was inspired by the term “twice exceptional” (2E), that has been used to refer to people (especially children) who have both aspects of giftedness and aspects of a disability. I relate well to the 2E label, especially since I’ve developed a chronic illness. However, given the uniqueness of being on the autism spectrum and simultaneously having a chronic illness of the “PANS/PANDAS/Lyme group” (for the rest of this post, “PPL”), I felt that a new term was necessary. Originally I came up with “twice weird”, but “twice apart” (2A) sounds more neutral.

Someone like Jacob Barnett is a great illustration of autism without PPL. He’s “quirky” and quite atypical for someone his age, but not only is he obviously smart, he’s funny and generally happy and good-natured. Without PPL, I myself was very much like Jacob Barnett.

When you add PPL to the “mix”, however, you get someone who is not only intellectually gifted but socially awkward, but who is also short-tempered, someone who easily becomes bitter and angry, and who finds it difficult to get along with others enough to make something of those gifts. And you get someone whom, it seems, it’s VERY difficult for the average person to relate to.

Much of the time I don’t spend thinking about intellectual things, or how to improve my PPL symptoms, is spent trying to understand why I can’t get a girlfriend. And it’s not even as simple as “why I can’t get a girlfriend”, it’s why I can’t meet girls who relate to me. I go back and forth between all kinds of hypotheses, a few of which are the following:

  1. Girls are not “nerdy”/otherwise intellectually unique. I.e., the idea that there’s no “female Jacob Barnett” (Jackie Barnett?). Except, while this may be true on average, there are women who are quite “nerdy”, in fact some more so than I am (i.e., who are into anime, who are shyer than myself, who never go to parties or even drink any alcohol, etc.) Except all of the ones I know are significantly less “ragey” than I am, and more “professional”, i.e., they display fewer signs of PPL.
  2. Girls rarely experience PPL. While there MAY be a slight slant in this direction, almost every PPL/chronic illness group I’ve known actually has a female majority! So that doesn’t seem like it.
  3. Girls with ASD and PPL are almost always asexual and aromantic, therefore they’re disinterested in dating at least until they get healthier. Except, I’ve seen women in PPL groups talk about their hypersexuality. The problem is, they almost always have an outlet for that hypersexuality that involves another person.

So to sum those up, I’m less awkward, shy, and bad at conversation than a lot of people in autism groups, and less sick than a decent number of people in PPL groups. Yet a sizeable minority at least of people in PPL groups are in long-term relationships, and a few have kids of their own! While on the other hand there are quite a few autistic people who are bitter about not getting sex/relationships, I’ve heard “through the grapevine” that Jacob Barnett himself has had at least one girlfriend.

So I’ve gathered it must be something about having BOTH ASD, like Jacob Barnett, AND PPL. To borrow a term from the social sciences, there is a very significant intersectionality between the two. This intersectionality is what I refer to as being “twice apart” (2A).

I’ve thought that possibly this combination is only a “death sentence” to males in terms of dating, because women can always find someone. Reading about people like Elliot Rodgers can easily give you this impression, because I’ve never read about a woman who went on a rampage because some other women could get a boyfriend and she couldn’t(*). Yet I’ve realized that I can’t actually know this. That’s because I’ve never actually met a 2A woman. And to be fair, I have known very few other 2A boys/men, as well.

So that’s the central issue, and why I started this blog. Not only does the dating issue hinge on it, but there are other ways in which the challenges of a 2A are unique. Like, the rage-proneness and volatility of PPL, when applied to someone like Jacob Barnett, can lead to someone who has trouble getting along with research colleagues and comes across as arrogant, and/or who doesn’t have the emotional endurance to pursue one theory before starting chasing another. This isn’t purely theoretical, I’ve personally dealt with both of these issues before.

(*)Actually, I recall that years back there was a woman from NASA who drove an absurd distance to commit some crime because a guy didn’t like her. And I don’t have any evidence that either she or Elliot Rodgers had PPL, but every time I read about something like that I have to wonder if the perpetrator was 2A, because I feel that is the way we “snap”, if at all.