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.