Autistic or highly sensitive?

Disclaimer: As most texts I’ve written lately, this too is mostly based on a visceral reaction to something I read and then tried to make sense of. It may not make sense for you, even if I did provide lots of details regarding not commonly known concepts (or maybe because of that, I can’t know how you think). I may or may not republish this piece in a shorter, highly edited version. This one is pretty close to raw. Proceed at your own peril.

This article is prompted by someone in the costume community (someone that I follow and admire for their integrity and way of looking at the world) supporting the idea that they are a Highly Sensitive Person (HSP) and not at all autistic, because they got a diagnosis of “not autistic” from a “professional”.

While I do not want to go into how most professionals today have no idea about autism and how it presents in most of the human population, especially in adults and especially in females, so they can’t really say “you’re not autistic” and make you take their word for it, I did want to explore this relationship between being autistic and being highly sensitive, as while researching autism I have never come upon this term of “highly sensitive”, even though I do identify as both highly sensitive and autistic (I did come upon “sensory processing disorder”, but again, that’s only considered a “disorder” because the sensory processing of autistic people is not the same as that of neurotypicals, so “there must be something wrong with it”).

A little bit about me, first, so you understand why I’m doing this.

A few years ago, I stumbled upon the questionnaire that Elaine Aron, the mother of HSP, uses to separate highly sensitive people from the not-so-sensitive people (I don’t know her term for the people who are not highly sensitive, but I’m not going to use “normal” — there is no place left for “normal” in my world; I also wouldn’t call them neurotypical, as I don’t know if they are indeed neurotypical in the widely accepted version of this word). I filled it out and, what a surprise, I realized I was highly sensitive.

I think I even tried to read one of her books on the topic and it left me cold, as in “I read this, but it doesn’t really do anything for me”. I can’t find it in my account at Goodreads, but that may be because I did read it and forgot to post a review, or it was so bad that I didn’t even finish reading it, hence no review.

So that was that. I was highly sensitive, something I’d known my whole life. No big changes followed, because I already had systems in place for dealing with my sensory overload. I would avoid noisy or crowded places if there wasn’t good music available, I would run away from people who overwhelmed me, I would use earphones and hats and my funny clothes to protect myself from the environment. And let’s not forget the photochromic lenses on my glasses, that have protected me from the piercing rays of the sun for so many years.

But a year ago I also realized that I’m autistic. And that changed everything. It didn’t just explain my sensitivity to physical and emotional stimuli, it also explained why most people don’t get my jokes and why I was bullied as a child and why I was so exhausted (masking — masking is why).

There are so many autistic traits that are obvious for autistics, but not for the scientific community. So now I’m curious. Is there really such a divide between being highly sensitive and being autistic or is it just a mental construct because of how sensitive the scientific community (pun intended) is to their views being challenged by outsiders who hold no respect for their (ableist, racist, sexist) forefathers?

I don’t have the backup of scientific literature on this (because it’s mostly, as I said before, ableist, racist and sexist), but I am a scientist. And I’m autistic with a few “superpowers”, one of which is being able to see patterns and connections in seemingly disconnected topics or areas.

So let’s dig into this.

If you look up “autism vs. highly sensitive person” you’ll find just a few relevant articles online on this topic. I say relevant because, as we all know, most search results for anything are not relevant to what you actually want to find. What is relevant, in this case, is any text or other media dealing with the connections (or lack thereof) between being autistic and a highly sensitive person (HSP for short).

There is an article in Psychology Today that translates to a non-scientist a meta-analysis published as a scientific article in 2018 in the journal “Philosophical transactions B”. If you’ve never heard of this journal, don’t fret. If it doesn’t sound like it has anything to do with psychology, that’s because it’s a journal meant for reviews and opinion pieces by leading scientists. And while that may be fine and dandy for the “hard” sciences (it’s pretty difficult to subjectively interpret hard data on physical or chemical processes, but it has been known to happen), when it comes to the “soft” sciences, there is a whole lot of room for interpretation, especially when you start from an outdated premise, based on subjective observations of scientists half a century ago.

What I mean by that is that the paper is based on research on autism that hasn’t really evolved during the last several decades. It’s not only based on primary sources (that would mean articles where experiments and their results are presented), but also on meta-analyses and review articles.

I shouldn’t have to tell you that doing a review of reviews is not highly regarded in science, especially when it comes to highly subjective data like that derived from qualitative analysis (yes, I know some of the data in the articles comes from MRIs and while the variation in relaxation times or diffusion coefficients in the MRI images is hard data, the interpretation of the meaning behind that data is highly subjective and based on the current understanding of the brain activity of a quite small number of people — I should at least have learned this much from five years of working in NMR).

We now know that the “diagnostic” criteria for autism (no, not “autism spectrum disorder”; autism is a spectrum in itself, so “autism spectrum” is a tautology, and it definitely is not a pathological disorder) are outdated and skewed towards the “obvious” white male autistic children that were brought to and observed by white male scientists because they couldn’t mask their differences with the world (couldn’t because they didn’t have the ability or the space to develop the skills — but this isn’t to say that they should have to mask, just that neurotypicals are very easily offended by things they don’t consider “normal”, even if they don’t affect anyone).

So if we take into account that most scientific literature in the field of autism has yet to catch up to the fact that you can indeed be autistic and an adult and a female and non-white/Caucasian, then this review is just that — a review of literature that ignores more than half of the human population (by more than half I mean about 80% or more). So what they find as representative for the outdated views on autism , interpreted by the person writing for Psychology Today — “Autism comes with “social deficits”; high sensitivity does not”, “For highly sensitive people, social situations are (extra) rewarding” and “Their brains handle stimuli in dramatically different ways”, is just a misunderstanding of a large population of autistic people.

First, let’s tackle the “social deficits” conclusion. There is so much written already about the social deficits that autistics are perceived to have in relation to neurotypicals, so I’ll just write here a short summary: autistics have social deficits in an environment that not only doesn’t value their ways of expressing themselves and their extremely valuable emotions and thoughts (as valuable as everyone else’s, in fact), but also pathologizes them and tries to “fix” them, to be more in line with what is currently socially acceptable in most cultures (I am certain that there are cultures where differences are valued and humans are considered to have intrinsic value regardless of their mode or expression, but they are not a majority).

A lot of people who are perceived as only highly sensitive may have learned something that is intrinsic in a lot of autistic females: masking. Social masking, to be exact. We listen carefully, imitate those who we respect, pretend to be people we are not, in order to fit in with society and be considered social. We internalize this behavior so much so that it becomes our primary way of being, after having weeded out anything that the society at large considers uncomfortable or uncanny, such as saying the truth all the time, even if it hurts people’s egos, or showing solutions to problems that people don’t really want fixed, even if they complain constantly about them (if they fixed them, there would be nothing left to whine about and whining is an essential part of being a social human).

Just as an example, at some point in my life, I was so proud of being super social, being able to have conversations with anyone in any place, being able to present exactly the person they expected, essentially being a chameleon. I would mold my outer and inner being to reflect the person in front of me. With someone calm and dreamy I’d be calm and dreamy, letting conversations flow slowly and exploring esoteric subjects without judgment of the lack of scientific rigor in their approach. With a combative type of person I’d be playful and loud, throwing replies before they had time to process. With someone authoritative I’d be serious and stern, listening carefully and only delivering really well thought out responses. But of course this would only happen with people I felt comfortable around, not those who made fun of me or pretended to be superior.

The problem with being a chameleon is when you have to please several people at the same time, people with opposing views. That’s when the mask breaks. In such cases, instead of being part of any conversation, I’d just observe, because there was no time for me to detail any of my thoughts on the subjects being discussed(group discussions usually consist of several topics of conversation thrown over each other at the same time).

Masking prevents people from being acknowledged as autistic because most practitioners who “diagnose” autism have no idea what masking is and how to spot it. Masking is a kind of a lie that we build slowly over the course of our childhoods and early adulthoods to become part of a society that doesn’t accept us as full human beings until we appear to conform to its (sometimes) stupid rules. And even if I can’t lie to save my life (that’s debatable, but for another article), I am aware that I have been lying without being conscious of it for almost two decades. That hurts, especially as one of my principles in life is “no lies”.

The second misconception, that autistic people don’t consider social situations rewarding, is based on so many false premises that it falls on its head the moment you look at it.

First of all, it would mean that autistics lead miserable lives, which is not true and could not be true, as we would probably all die of pain if we had no rewards from our social lives. That would mean that autistic children don’t need affection from their caretakers and their extended family, they don’t need friends and definitely don’t need to build families of their own once they become adults.

Sure, there are some people out there who are completely non-social and would prefer to live alone. But they are not necessarily autistic.

A lot of autistic people are highly empathetic, so much so that a lot of the times we are overwhelmed by emotions, not only our own, but also the emotions of other people. And as much as neuroscientists would like to tell us that we lack activation in the mirror neurons that neurotypicals use for mirroring other people’s emotions, they ignore a simple fact: a different brain wiring (which is now considered as standing at the base of autism) means that different regions of the brain will light up with activity when a certain stimulus is perceived, compared to neurotypicals. And what’s more, the principle of neurodiversity lies on the idea that no two neurodiverse brains are alike, so there will be a much higher variability in the results obtained from a culturally diverse group of autistics than from a culturally diverse group of neurotypicals.

If the people performing these studies were to select a diverse group of autistics and a diverse group of neurotypicals, I’m pretty sure they woudn’t be able to publish their results because they would be all over the map and journal editors don’t like to publish results that are not neat and easily interpretable. Scattered data is not easy to interpret, so it’s easier to just select a very small cohort and go with it, then draw conclusions on the basis of the results obtained from less than ten people. I am very familiar with NMR data interpretation and clinical study design, so I am well aware that the cohorts that we use in this kind of study are simply not big enough. That’s one of the reasons I’m leaving the field, you can’t draw conclusions about the human brain (or liver or knee) based on one hour of imaging for ten people.

Getting back to the social reward aspect. If you read the original review, you will see that they only observe activation of certain areas of the brains of the participants, areas which are conventionally attributed to different traits and behaviors, then they say “if this person has activation in area X, they have traits Y, Z and T”.

There is no discussion about the stimuli being used to activate the participants’ brains, nor about the baseline activity of these people’s brains, nor about their histories, nor about the environment in which the tests were performed, not about the fact that different brains may have different configurations, hence the activation of a specific area in an autistic individual will not correlate to outwardly expressed traits or sensitivities.

Have you ever been inside or close to an MRI machine in use? I have and I know I would never want to work close to one (I mean I did work for a few years close to other high-field NMR machines and it was hell for my ears). It is loud. They say it goes up to 110 decibels and it seems like the noise affects the results in fMRI scans significantly enough to warrant studies even 15 years ago. It is also known that stronger magnets produce louder noise and I’m happy and sad to tell you that nowadays hospitals are buying MRI machines with stronger and stronger magnets, going all the way up to 9 or even 10 Tesla, where the typical machine used for fMRI now has a 3 Tesla magnet.

If this all means nothing to you, it’s not a problem, the only thing I need you to remember that those magnets constantly switching on and off for measurements are extremely noisy. It’s like someone slamming a heavy metal cabinet into a metal wall close to your ear, once a second or more often, for about 40 minutes. You get some earphones for the “discomfort”, but if you have any issues with pressure or if you need to wear glasses for visual tasks, they are really uncomfortable and produce more discomfort. They are also pretty useless for such loud sounds.

All of these factors alone, besides the uncomfortable bed, the claustrophobic tunnel you are placed into, the fact that you are forced to sit still, without a muscle moving (no stimming for you, sorry), contribute to skewed results in any population that is hypersensitive to external stimuli. I don’t care if you’re showing me a photo of a puppy or a photo of a little girl crying, if I’m uncomfortable to the point of screaming, you will not measure any of my emotions relating to the photo. I’m pretty sure that’s the case in a lot of fMRI experiments, which is why I think we should take the results themselves with a grain of salt (even if we completely disregard my previous argument re neuroplasticity and different parts of our brains performing “unexpected” functions).

I think I’ve already tackled the “handling of stimuli in different ways”, so I will not insist. Neurodiversity means that different autistics will have different brain configurations to deal with external or internal stimuli, under the control of the experimenter or not. That means that people who are highly sensitive and have strong masking abilities will potentially have different brain configurations from people who are also highly sensitive, but are maybe too sensitive and didn’t have the space or time to develop coping mechanisms to things that overwhelm them. It may not even be possible to develop masking skills and adapt neurotypical social behavior for some people, due to them being constantly under attack from outside and inside.

If you were in pain that you consider at intensity between 9 and 10 on a 1–10 scale, all the time, all of your life, without respite, would you be able to show empathy to others? Would you have the capacity to follow subtle social cues and look people in the eye without wanting to scream at them? Or would you try to run away, to hide somewhere where the pain becomes smaller, more manageable, somewhere where people would leave you alone?

Being highly sensitive doesn’t only mean “Oh, look, I can sense so many more things that you are even able to imagine and I can see connections between details you are not even able to perceive”, it also means “That light hurts my eyes, I can hear the buzzing of fluorescent lights everywhere, I can hear the buzzing of insects all the time when I’m outside, your touch feels like fire and the shower feels like tiny balls of acid hitting my skin, that overripe fruit you are munching on is making me nauseous, this food is too spicy, I can’t eat it because it hurts”.

What really offends me about this review article and the Psychology Today article based on it is the fact that some autistic traits (high empathy, reflective thinking) are considered highly beneficial and highly desirable only in the context of HSP. As if autistics are some broken beings without any sense of the world, while highly sensitive people (not to be confused with “people with autism” or “individuals with ASD” as they like to repeat over and over) are the most magical beings that exist, beneficial fairies who can change the world for the better…

Moving on. The second result I got is a positive, in my view, as it is an opinion piece on how wrong Elaine Aron is when separating HSP from autism, due to her lack of understanding on what autism is and how it presents itself in most autistics (as a commented on that article mentions, everyone, female and male and non-binary autistics have empathy, some much more than neurotypicals, even if neurotypicals cannot interpret and understand the ways in which this empathy is expressed).

I invite you to read it for there are many points I don’t need to touch upon again. This brings me to the next result, the FAQ that is referenced in this opinion piece, on Elaine Aron’s website. There are so many misconceptions about autism on this page and it’s so superficial, that I don’t know if I should even keep that link active.

The list uses such offensive language, but I’m unsure if I should tackle everything again. But then again, even Kristen Hovet, the author of the opinion piece, gets a few things wrong. Maybe I should also write a list of things to not say to an autistic person and of language to not use when talking about us (although I’m pretty sure there are several such lists available already — OK, most of them are offensive too, so I only linked two, but they don’t really cover what I wanted to say…).

This list is so bad, that I don’t even know where to start. I have mentioned many times that autism is not a disorder, nor a disease. It doesn’t cause anything, it is just a label for people who work differently from the majority, who are quite uniform. Someone who is supposed to be highly sensitive and to have studied highly sensitive people all her life should be at least a little sensitive to her language. But she’s not and just barges into something she doesn’t understand with the delicacy of a bull in a porcelain shop (I really like this version of the expression, the China version simply doesn’t make sense — not all porcelain is made in China and just because the idiom stuck around for decades or centuries, it doesn’t mean that we can’t transform it).

Person-first language is not acceptable. ASD (with emphasis on disorder) is not acceptable. Saying that autism makes people odd or that it is a problem is not acceptable. Differences in processing are not necessarily problems.

For a person who is supposedly very knowledgeable in the field of psychology, the language that Dr. Aron uses is very restrictive, ableist and shows a complete lack of competence in the field where she is theoretically the expert. So any pseudoarguments she brings in supporting high sensitivity as a “trait” different from and completely excluding autism are only that. Pseudoarguments. Not based on any real science (sorry, DSM V, you are way outdated in this debate). Not based on any real understanding on what it means to be highly sensitive and what comes along with being highly sensitive.

There is one more relevant result that I found that I’d like to introduce here. This blog post, as confused as it sounds at a first read, seems to reach a similar conclusion to mine. There is much more to this relationship than what is currently accepted by the wider audience and fandom of Dr. Aron who identifies as highly sensitive.

I’m not arguing that all highly sensitive people are autistics. That would be really stupid. I’m just saying that the way this relationship has been presented so far is not genuine and needs to be corrected.

If “high sensitivity” is a trait of a percentage of the population (I really doubt it’s 20%, simply on the basis of statistics — if you assume a simple Gaussian distribution of the values of this trait and define “high” as one standard deviation away from the measured mean value, you’d still only get about 16% of the population in the “high” range, so that threshold needs to be really low to include an extra 4% of the “normal” population), it should also be a trait of autistic people, who are potentially many more than it is currently believed (about 2% of the population in current estimates).

I am pretty sure that if we raised the threshold for “high” sensitivity to two standard deviations away from the mean and we identified all the people on this planet who are autistic, including those who mask so expertly that they’re not even aware of it, we’d get a really big overlap in the two populations. Not perfect overlap, as it is known that there are many autistics who have low sensitivity for certain stimuli and there are many diseases that can make one highly sensitive in certain respects. But those would be the outliers in this case.

I can’t test this theory due to multiple reasons, but it makes much more sense than the utter rubbish on that FAQ page that Dr. Aron posted on her website.

I hope it also makes sense to you. If not, let me know in the comments. But use your system two, not your automatic response system. I don’t care any more if I offend you with my opinions being different from the mainstream.

TL;DR version: being highly sensitive is part of being autistic and separating them for most people is not only stupid, but also not possible. If you need more detail, scroll back up and have fun.