Why you should rephrase your experimental discussion on autism

Andrea Crețu
14 min readMay 31, 2021

I just finished watching this presentation of results from a research group at UCLA working on autism and I need to vent.

Plus explain some things that don’t seem to occur to the scientists who do these experiments and write out their papers or make public presentations.

Here’s the whole thing, if you want to watch it, it’s from 2018, but I doubt that the scientists involved in the research presented here have been reading anything written by autistic people during the past three years, so probably my observations would be novel for them if they ever had the opportunity to see this.

Watch out for nasty “ASD” language and ableism.

Now I could just leave a comment below the video, like others have tried in vain, before being drowned by angry autism moms who probably terrorize their children, then wonder what’s wrong with them (not intentionally, but a lot of “well-meaning” people terrorize autistics, it’s not very difficult).

But I need to deconstruct some assumptions made in the interpretations of the results presented in this video and I need ample space for it. Plus time to think about how to phrase it.

Oh, by the way, the reason I even got to watch this is another video I watched previously, about a recent development in mental health “disorder” classification, called RDoc, which relies on actual current science and available technologies, as opposed to observations made by rich racist old white men from the 19th century.

That video I actually recommend, but there was one point at the end that bothered me, as it mentioned autism, so I wondered what had been happening in the past 7 years within that framework, relating to autism. A lot, apparently. Here’s the RDoc video.

Now let’s get back to Susan, who seems to be well-intentioned, if also ill-informed regarding what autism really is and what it means for autistic folks (or folx, if you prefer) to exist in a world that sees them as broken and in need of fixing.

She begins with a study regarding a balance of excitation and inhibition of GABA in the brains of people. I won’t go into detail regarding the actual mechanisms and what the GABA does (but I guess it is highly influenced by the environment, including the social environment).

Suffice to say that GABA controls how much activity happens in the brain. We assume that autistic brains are highly excitable and need to be kept under control or “returned to normal”, but these are two false assumptions, one of which is refuted later on in another study, that shows that different autistic brains have distinctly different configurations.

So function couldn’t be identical across all autistic brains, right? Some might be over-excited as compared to what scientists consider “normal” (which is not a value that all NTs have, but an average across all values) and some might be under-excited as compared to the “normal”.

But that doesn’t necessarily correlate with impairments in real life. It might, in some individuals, where specific brain regions are affected, so that they develop various “disorders” (dyslexia, dysgraphia, dyspraxia and dyscalculia, although these are also judged based on invented “standards” that “all kids should be able to attain” and that’s simply not realistic).

In case these specific individuals want an external intervention to help them achieve things that their brains are not wired for (like reading text printed in a font that makes letters dance in front of their eyes, in huge paragraphs without breaks), then this research might be beneficial to them, in helping find a pharmaceutical solution, following the principles of the RDoc.

But that doesn’t mean that *all autistic individuals* require intervention for anything, especially regarding the excitability of their brains.

I, for one, am really happy that my brain is as active as it is and working on getting it to quiet down (using meditation and awareness techniques) didn’t only not help me in the long run (I was very cool for a couple of years there, indeed), but it also killed my creativity, my spontaneity, my curiosity, and paved the way towards masking more and more, to conform to this “ideal” that most humans have in mind for other people, but never for themselves.

I’m still working on undoing all the harm I did to myself by willfully controlling my reactivity, my mind and my body.

Plus, let’s not forget all the people whose brains are less excitable by default. They may be absorbed in their inner universes for most time and that’s fine with me. Some of these people are great inventors, if only allowed to exist in their own ways, without constant external pressure.

The results from the one study that Susan presents show that placebo has no effect on autistics (duh), who are way out of the way, when compared to “controls” or NT (I wish there was a third measurement done before any kind of intervention, just to get the baseline values), but that both groups seem identical after being administered a drug, very close to the initial state of the “control” group.

Which means that they managed to kill a whole lot of activity in the brains of the autistic kids who participated in the study.

What I want to know is how the kids felt after getting the drug. Did they suddenly feel “better” or “like they belong to the world now” or that “they see now what the big deal is with making eye contact, since their senses are so dulled that they need to actually look at someone’s face to understand the nuances of what they are saying”?

That is the most important point of this experiment for me, the actual result in the people who were subjected to it. They are not mice, they can speak. I guess I’ll look up the study and see whether the experimenters actually asked any questions of their participants, or just treated them like blocks of cheese.

(I did use to measure bits of cartilage using NMR techniques and I usually didn’t ask them questions, but I sure wish I could have asked some questions of their owners, the people whose knees had been sawed off to be replaced and sent to me for measurements).

The second study that Susan talks about was done on babies and infants.

Babies sleeping inside a super high field MRI machine during fMRI experiments (because you can’t do functional experiments on older/weaker generations of MRI machines, unfortunately).

I don’t know about you, but I’ve been in one of those 3 Tesla monsters (it’s not a monster, but if I ever write a book about monsters, that would be a beast to reckon with) and it is loud as hell. Almost as loud as those enormous firecrackers my lovely German neighbors like to light up at my feet every New Year’s eve.

Nothing beats those damned firecrackers, but at least they pop only once. But this machine sounds like a devil playing drums all around your head (it’s not the devil, it’s just electromagnets switching on and off several times a second or sometimes once every couple of seconds).

The flimsy earphones they give you inside the machine 1. don’t fit properly on most heads (definitely not on baby heads), 2. don’t do anything about the sound because it is transmitted through your body, since you lay on the actual source of the sound.

I’ll need to dig up this paper (never mind, here it is) to see how they convinced babies to sleep inside an fMRI machine during experiments because I’m pretty sure that if I were a baby, I would wake up at the first cracking of the machine, unless I’d been infused with some sleep-enhancing chemicals that would prevent me from waking while screaming at the top of my lungs (did I mention that I’m sensitive to sound and I cried through half of my childhood because of auditory overload? no? well, imagine an auditorily sensitive baby next to an airplane engine).

Moving on, let’s assume that the researchers found a way to make babies sleep inside noisy machines for the 5 minutes needed for their measurements (haha, more like 40–60 minutes of actual measurement time, what with all the precursor measurements needed to be made before the chosen experimental technique for the specific experiment). What did they find?

And, most importantly, how did they interpret what they found?

For clarity in interpretation, I should also tell you what they did. They looked at relationships between various regions of the babies’ brains, which are in sync, meaning that they are somewhat connected and they communicate.

They looked at regions they expected to be different in autistic brains, based on previous experiments. They created a correlation matrix based on this data, which they plot on a very abstract graph (I have no idea what the principal components of this analysis are, but maybe it’s all explained in the paper in language I can’t grasp anyway).

First of all, just looking at the presented analyzed data (based on 59 participants, much better than other studies and good enough for some statistics), they found two clusters. Or what seems like a big cluster (good ‘ol NT kids) and a very wide, scattered “cluster” (the non-NT kids, as per their interpretation).

If you look at the data, these two components are pretty obvious, even had they chosen to use the same color for all the dots on their graph.

But here comes the problem. They take this data and say “all the kids on the left of this graph are autistic” and they base that on evaluations made at 2 years of age.

Now, if you’re really good at spotting autistic kids (which is highly unlikely, since the “diagnostic criteria” are culturally biased and discriminatory), you might be able to assess all the kids who took part in this experiment and say “this kid is autistic” and “this kid isn’t”, which they did (by using the DSM IV, which was published in 1994!) when the kid was 2 years old.

But what they also did was to assess the kids at an unknown age (they don’t mention in the paper, which I find a bit shady) regarding their behavior. They used the RBS-R (whatever that means, since they don’t deign to expand on the abbreviation), which is filled by parents, who are highly subjective and cannot assess things scientifically.

They only have their own experience to rate anything by, so while some parents might think that some repetitive behaviors are normal and part of the kid’s development, some parents might get extremely annoyed by their child not conforming to their adult way of life (which they shouldn’t, but some people think they were born as adults), so they’ll rate even the tiniest thing as “behavior occurs and is a severe problem”. I mean, have you seen parents with several kids on a bus?

The scientists also used other tests, but they mentioned they did those at 24 months. Now what I’m really curious about and was left out of the paper, is when the data analysis happened.

Since they say that they correlated behavior with the experimental results, I’ll assume they did all the image analysis (of which they had to throw out a lot because babies move during the experiments…) after the parent behavior assessment (the highly biased one, yes).

Which means that they have all of this great experimental data (let’s assume it’s great data) and they correlate it with this shitty data (from parents, no offense, parents), but they somehow manage to get a decent result with two very clearly separated groups.

What the results tell me, as an autistic person who can think beyond a map of dots, is that autistic brains are much more heterogeneous than the brains of NTs and here’s the science to prove it. Even at 6 months of age, when the brain is barely waking up to the world and starting to make sense of it, learn and create an inner world that reflects the outer world, autistics are different in the intensity of their brain activity.

It doesn’t tell me that autistics are broken because some have stronger connections between some regions and weaker connections in other regions, when compared to a model of a non-autistic human (which is not true to life, it’s just a dummy that’s completely average, no actual individual fits this profile in real life).

It doesn’t tell me that kids who get put into an MRI machine at 6 months old and get a personalized assessment of their brain connectivity should be put into “early intervention” (which is essentially ABA, which is meant to destroy the individual and replace them with the dummy I told you about in the last paragraph, which is impossible, thus making autistic people miserable for the entirety of their childhoods and way into adulthood).

It tells me that these kids who can afford to be put into fancy machines and get their personalized assessment (if this is a thing that’s going to happen in the future) should get their needs met in ways that align with the way their brains make sense of the world.

It tells me that the early intervention should be done on parents who need to learn to communicate with their autistic (read different, not broken) kid, to be able to understand their needs and to fulfill them accordingly.

Now that would be a great use of the results of this study, as it means that fewer kids would have to grow up in a world they don’t understand and that doesn’t understand them. Except it’s not economically feasible and will probably never happen, but hey, science is fun.

What really pisses me off about this study and others like it is the insistence on the false problem they seem to want to resolve. The problem is not that kids are not put early enough in “early intervention” (essentially long-term torture), so that we need to find ways to diagnose kids as early as possible, to make sure they are as traumatized as they can be when they finally grow up and branch out on their own.

The problem is that there are humans who don’t fit with the general society and the traditions and rules that work for the majority, but rather work in different ways, valid ways that are not acknowledged today.

So we need to find a way to screen out these humans early on, so that we make sure we adapt our methods to their ways of perceiving the world and grow them into the best version of themselves that they want to be (nobody should be forced to be better than what they wish to be, that’s another problem that we have in the current society, we want everyone else to perform “better”, but we rarely take the time to work on ourselves).

If we glide over all the ableist BS and all the “early intervention” drivel that’s crammed uselessly into this paper, we are left with an interesting bit of research that could use some tweaking.

But allow me to cite only one very wrong phrase that makes my blood boil “Research on infants at high familial risk for ASD has revealed a seemingly narrow window of opportunity, before the age of 24 months, when intervention may have the potential to ameliorate the unfolding of the core features of this disorder”.

What this phrase translates into is this “We couldn’t get any proper results (kids behaving like we want them to, as opposed to their natural inclinations) from early intervention when working with kids that are older than 2 years of age, since ABA is essentially torture and manipulation and kids are smart and learn to pretend, so as to not be punished by the ABA practitioners, who have no knowledge of basic biology or psychology; so we decided to try it with kids that are not yet detached from their caregivers and are fully dependent on them, in the hopes that we will scar these kids so much into compliance, that they will never even have the physical capacity to create independent thoughts and feelings”.

That is what I read and there is no way you can convince me otherwise, because there is so much crap published on the same topic in what should be scientific literature, that it literally hurts.

One more thing, I believe that we need context for scientific endeavors. But we also need to look at that context and analyze it before we use it as a reason for any experiment.

There is so much literature nowadays published by autistic authors, that ignoring it is not an option for scientists experimenting on autistic children. You can’t, as a scientist studying autism, honestly say any more “we didn’t know that autism is not a scourge and it doesn’t need to be fixed or cured or treated, but rather studied and understood as part of human diversity, just like blood types and the human anatomy”.

There is no excuse for ignorance in this day and age, when scientists are supposed to be the most informed and most able to grasp concepts that are not familiar to them, by reading and participating in conferences and asking questions of people, especially the people they say they study.

OK, let’s leave that aside for now and concentrate on the last study that Susan presents, which you can read here if you’re curious (but don’t, not unless you want to bang your head on the walls repetitively).

This one is a bit easier to follow along with (in video form!) and it’s a bit more straightforward. Some scientists took imaging data from all over the place in the USA (only on male kids and adults, mind you!), and did statistics on the images, taking into account several aspects of the brains themselves.

They found that the autistic brains they had data on could be divided into three major groups with distinct features and I think that’s awesome because we finally have a representation of the diversity of brain differences inside the autism spectrum. Well, for male American brains anyway. It’s a beginning.

Now I wonder what would have happened had the scientists not removed the data from female subjects. Would they find more groups? The same three? Will we ever know?

I truly hope so, I hope that they get data from all over the world, from females and non-binary people, from cis and transgender people, from all cultural backgrounds.

Will it ever happen? Probably not… MRI is expensive and “autism research” is not yet oriented towards understanding autism, but it is still in the Middle Ages with regards to its object. It likes to identify markers and causes, but not to understand how the differences in brain structures of autistic people manifest in real life, without judgement and without pathologizing.

If we move on to the other results, those are not very impressive to me because they are based on biased assessments (again, they use the DSM IV for some reason, but they also use IQ tests, which do not accurately represent any specific form of intelligence, especially in disabled individuals).

There are some differences in the perceived behavior of people from different groups, but all the data is scattered and I’m really not impressed, nor am I going to go into detail why the interpretation is wrong, since I already mentioned that the premises are highly subjective.

Whew, now that one weight is off of my chest, I feel somewhat lighter.

I’d feel much lighter if scientists took these observations into consideration (minus the salt, which I added for flavoring because this is, after all, not a scientific publication, thank the universe) when developing their experiments and when interpreting the data they obtain.

If there’s one thing that I learned while spending 5 years of my life in the stratosphere of academia, besides the inner workings of NMR and MRI, is that my wit and senses will only fail me if I fail to use them properly; that is, to criticize the work of others without holding back, for fear that my ideas will be considered too radical and too outside of the norm to be accepted for publication, which is why I censored myself mightily when writing introductions/discussions and I hated every minute of it.

But out here, on the wild internet, I can criticize and comment to my heart’s content. I will be the second reviewer with a titanium fist (iron is soft) and I’ll demolish any piece of scientific literature that is based on flimsy foundations that I am intimately familiar with because I’m autistic.

So watch me go on this frightful journey of demolition and follow along with me if you dare. Or watch me promptly forget about this for 3 months and randomly start writing on the topic again when I find another video that treats autism just a tad too judgmentally.

The future is unknown. The intellectual capacity of the brain writing this fluctuates. This is not a promise, but it is certainty. I will be back with more critique at some point in the future.

Until then, be safe and wear your mask!

Rainbow light over an extended hand — photo by Valeria Boltneva

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Andrea Crețu

*Autistic maker, writer, reader, editor, scientist, baker etc.