Here comes the research sun
Well, an eclipsed sun, if you will.
The team of genius-autism-research-god Simon Baron-Cohen has done it again. It has researched (paper not peer reviewed or officially published yet in a journal). And not just his team, but a total of 29 people.
That’s a lot. The biggest team I’ve ever been on in an article was about 9 and even that seemed crowded (I did enjoy the study very much, though, and was primary investigator, so I got to write whatever I damn well pleased).
Wait, do all these 29 people agree on what the study suggests?
Probably not, as most of the time there’s a couple of main investigators and everyone else who contributes with a little morsel must be acknowledged as author, even if they did one measurement at one time or changed a few words in the manuscript. Way to get that sweet authorship on your CV, about 26 people.
Now, what is this about and why am I writing about it? I have a tight feeling in my stomach and my fingers are frozen (no, it’s not cold here and yes, cheese might be partially at fault, but I will not let you deny me mozzarella), so I will assume I’m angry.
This is how angry feels in my body because as an autistic person I’ve learned from a young age that I’m not allowed to feel and express my emotions, but should rather keep them in, so when this tension is too much and dancing doesn’t work, writing out things and taking long, deep breaths while typing usually helps.
This article that I linked above and which is still in its early draft stages, before being demolished by reviewer 2 (why does it always have to be reviewer 2) and partially completely rewritten before it’s rejected by 7 journals (been there, done that, but then again my boss was not exactly no.1 in the field of my paper and couldn’t subliminally influence all the potential reviewers like here mister-fix-my-kid can) is the source of the anger.
It is available in a repository to read and on ResearchGate as an abstract (found out about the repository after writing my comment on the ResearchGate page, have a looky here).
I read the abstract because the title intrigued me (don’t ask me why I was following this guy on ResearchGate, OK? I don’t know why, I have no memories of 2019 when it probably happened, before I realized how off almost the entire field of autism study is).
It just appeared in my feed, which is usually filled with, I kid you not, stuff like “Intravoxel Incoherent Motion (IVIM) MR Quantification in Locally Advanced Cervical Cancer (LACC): Preliminary Study on Assessment of Tumor Aggressiveness and Response to Neoadjuvant Chemotherapy” (this actually sounds legible, let me find something else) or “Use of a non-collinear wave mixing technique to image internal microscale damage in concrete”. Eh, you get the point.
But what is in the abstract is more important. The assumptions and the bias and the cherry picking is astounding. If you read it, you must have figured out what I mean.
I articulated my “worries” in the comment I left there in the comments section (which I am 99% sure will not get an answer).
Let’s elaborate, though, as in the comment I really wanted to keep it short, but here I can diverge as much as I want (see what I did there, because I’m neurodivergent I am allowed to diverge, wink wink).
Let’s ignore the whole sex vs. gender issue that would invalidate from the start the premise of this study, which is based on “sex-differential neuroanatomy” (their words, not mine). As if there is a specific way a brain of a person with XX chromosomes will develop as opposed to the brain of a person with XY chromosomes, based purely on genetics.
There is no such thing as “purely genetic influence” on anything, especially our brains; our whole lives we are shaped and influenced by our environment, be it bio-chemical, physical or socio-cultural.
You will never see absolute differences between the arbitrary groups called “men” and “women” based on genes alone. Except that maybe most people in the “men” category have a shorter chromosome and are more prone to various diseases.
Oops, did they just erase an entire segment of the population? No, wait, how many segments, really? Let’s see: trans people, non-binary people, people who haven’t yet decided, people with different amounts/types of chromosomes than the theoretical “normal”.
Who says that because you have XY chromosomes your brain should display “manly” characteristics, whatever the hell that may mean, as we (should) all know that “male” and “female” are social constructs that vary from region to region and from time period to time period.
This is YouTube-level basic stuff that researchers are ignoring willingly.
The phenotype is influenced by more than just genetics, you know. Brains are plastic. That’s rule no.1 of neuroscience. They are influenced by everything around, genes get activated and deactivated under certain circumstances, trauma does “wonders” on brains and let’s not even get into degeneration due to various causes…
Pff. OK, let’s get back to the abstract. We ignore everything I just said because they ignored it too.
My first question was:
How did you account for the difference in diagnosis between the male/female population? Specifically, female-presenting people are less likely to receive an early autism diagnosis/confirmation, or any diagnosis at all, so did you take this into consideration while interpreting the data?
Let’s explore this a bit.
If you base a study on diagnosed autistic vs. “neurotypical” people with no further selection, you will run into trouble early on.
They said they used data banks, which are based on people volunteering to be in them, that is, for their very specific and very personal data to be used for research purposes (there’s a whole array of information about each individual in these data banks, very creepy if you ask me, as I know information systems are sooo vulnerable to data leaks, especially in a non-IT heavy facility that probably still uses Windows XP, ahem).
When you look at one of these data banks you’ll quickly notice the problems (or you won’t because you’re NT and can’t see problems and patterns like me, haa):
1. The data comes from volunteers that passed through the non-standard assessment process of identification of autistic individuals that psychiatrists use at their discretion. There are several “assessment tools” which are super ableist and based only on the outer appearance/behavior and the opinions of the family of the people assessed, not on the lived experience of these people.
This leads to a lot of bias, especially with regards to female-presenting people who are looked over or called “dramatic” or just plain ignored for their whole lives because they can mask and “don’t look autistic enough” and who don’t get a chance to get an official diagnosis and to volunteer to participate in this kind of data bank, so no research for them.
2. Parents volunteer the data for their children. The age range starts at 5 and I highly doubt that 5–6 year-olds have the capacity/are legally allowed to give permission for their personal data to be used in such a way for “research” purposes, especially given that this is genetic and other types of data that are not generally easy to gather.
This has an ick factor up to the sky for me, especially since the study is not aimed at creating a better environment for these autistic kids, it’s just for fun, to discover the “biological mechanisms underpinning the etiology of autism” (again I’m citing from the abstract).
Who in the world cares what the molecular mechanism that “generates” autistic traits is, if autistic people still suffer because their sensitivities are not catered to, their pain is not believed, their words, be they spoken or written, are not listened to?
It’s not like you can create a machine based on this information and pinpoint the exact location of “the autism” in the human body and exterminate it (you’d exterminate the person along with “the autism”).
This veers into the very dangerous territory of eugenics and I don’t know how much further SBC is willing to go on this path, as he’s made some very bold strides so far. Does he (and associates) really want to exterminate autistic people?
Doesn’t he know there’s a very high chance that quite a few of those 28 other people in the team that authored this paper are autistics themselves without knowing (there’s a much higher concentration of autistic people in academia than in the general work fields, ask me how I know)?
If you aim to exterminate the very people who come up with brilliant ideas that propel the world forward (we’ll get to the ADHD folks in a moment), who will be left to come up with ideas? Who will solve unsolvable problems? Who will write the books and make the art?
There will always be autistic folks because there will always be outliers in any distribution of traits.
You can’t exterminate autism from the population, even if you intimately know every little bio-chemical mechanism that is slightly different and that makes a person autistic…
3. The “non-autistic” people who volunteered in the data bank are in fact wild cards. You assume they are not autistic because they never got assessed. But that doesn’t mean there aren’t many autistic people in this segment who just don’t know.
So you can’t really make a comparison between “neurotypical” and “autistic” people because you have no idea what’s in your “neurotypical” group. It’s like comparing a crate full of apples, pears, coconuts, tomatoes, potatoes, yams, cherries and apricots to a crate full of baby carrots, potato chips, glitter, quinces, grapes, cherries, crystals, coconut shavings and rice cakes.
You have no way to compare two such diverse groups. They have similar flavors, but different textures, some are completely different like from another universe, some completely identical (find the object that belongs to both groups, you have 2 seconds; yes, it’s cherries; cherries are amazing and can mask really well).
This again introduces bias in your data. Do you interpret your results based on the assumption that the two groups are representative of the whole population and are distinct? Because that’s Bad Science™.
4. Let’s talk about privilege. You know who has access to autism diagnosis and whose parents are so stressed out by their kid not conforming to their expectations of perfection and who’s more likely to not learn to mask from an early age?
This is old information, but yes, white boys who grow up in (relatively) wealthy families in mostly western countries (what you consider “middle class” in the USA is wealthy by my standards). Who knew?
That is not to say that non-western countries don’t have people who get an official diagnosis, just that there’s a smaller chance that they will have been exposed to the predatory marketing of the researchers going after this data in mostly western countries and decided to participate/were allowed to participate.
After all, people outside the US and UK don’t exist, right? /s
OK, the premise of this study is crap, but who are you to judge the amazing work of 29 world-renowned scientists who know how to statistics?
Yes, that mistake is there on purpose, I don’t have a reference for it, it’s just something that I do, deal with it.
But wait, there is more!
For this one I do have a reference, it’s those early 00’s teleshopping commercials. If you know, you know.
Did I mention the ADHD folks?
They have a data bank for ADHD folks. Yes, those people who overlap with both autistics and non-autistics.
Noooo, what have you done.
How do you differentiate between:
- male autistics with ADHD,
- male autistics without ADHD,
- female autistics with ADHD,
- female autistics without ADHD,
- male non-autistics with ADHD,
- male non-autistics without ADHD,
- female non-autistics with ADHD,
- female non-autistics without ADHD,
- plus all the non-binary people with or without ADHD who don’t fit in either category and if you say one more time that gender is influenced by genetics I will throw you out a window and I am not kidding (I am, I am kidding, I don’t do violence).
That’s all I’m going to say on the topic of ADHD in this study.
Now what?
All my steam is gone. My hands are slightly warmer, my stomach is relaxed, I can breathe without consciously thinking about it, but the problems are still there.
Any conclusions based on a study with such flawed premises can be thrown out the window (OK, we can’t, unless we print them and I don’t litter, stop printing stuff to throw it out the window for dramatic effect!).
You cannot do Good Science™ without a solid premise based on the current state of knowledge at the time of the sciencing (see, I did it again, inventing words, who am I, myself?).
When you purposefully ignore entire swaths of the population and cherry pick your subjects, you are not going to get relevant information, no matter how many dozens of scientists analyze the data and no matter how pretty your fMRI images are.
It’s all useless. Useless work of hundreds of people (you didn’t think those 29 worked by themselves on all that data did you? Have you never heard of PhD candidates??).
OK, time to let this one rest.
No, I will not read the 40 page manuscript. I have PTSD from my last 40 page manuscript (I am not joking, I get a visceral reaction whenever I think of that thing and it’s horrible — the feeling, not the paper, it was actually a decent paper in the end).
Until the next time I find a gross and official-sounding thing to write extensively about from a purely emotional place, but also a scientific background and a PhD in It’s None of Your Business (NMR, it’s in Nuclear Magnetic Resonance, I wrote about this in other articles),
Andrea
