The Autistic Rant Hour

‍Gal: Welcome to The Autistic Rant Hour, the podcast where we rant and infodump about the aggravating, the inexplicable, the unjust and infuriating in all fields of life, one episode at a time. The Autistic Rant Hour is part of the Autistic Culture Podcast Network. I'm Dr. Gal: Schkolnik, pronouns: They/Them.

Exact sciences, such as math, physics, chemistry and biology, are things folks who consider themselves rational and logical assume can be trusted. And they would be, if scientists were as committed to facts and truth as most people believe they are. But scientists are only human, and some of them aren't even autistic, gasp! Earlier in my life, I had the privilege of pursuing an academic career in natural sciences. I did a bachelor's in Chemistry, a master's in Environmental Chemistry, and a PhD and postdoc in Biophysical Chemistry, and in each of these fields, I found hard working, dedicated professors, who would base their calculations on commonly accepted values with dubious origins, reject valid findings from publications to scoop the authors work and publish it as their own. In this scientific episode, I will be joined by Dr. Mary Sims, pronouns: She/Her, and together we will spill the tea about science shenanigans. And on the way, you might even learn some random details about Atmospheric Chemistry, Vibrational Spectroscopy, and Self-Assembled Monolayers. 

Mary, it's great to have you here! Could you tell us a bit about yourself and your career?

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Mary:  Um, yes, I'm Dr. Mary Simms. I'm a physician specializing in Neuropsychiatry. I have done a number of different things in my life, including being a hippie and living on the streets. But, um, none of that's really relevant to this show. The main thing is that, um, I saw your information and I really wanted to be involved in this podcast.

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Gal:  And you also have a podcast of your own coming on the Autistic Culture Podcast Network, right? Can you tell us a bit about that?

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Mary:  Oh, I'd love to. Yes. My podcast is going to be called Clinical Misfits, and it's about the time when I was practicing neuropsychiatry and the kind of patients I attracted and kept with me. And I wasn't able to do very much for them at the time, because I didn't know what the common thread was, but I knew there was something about these people. Turns out they're all neurodivergent and it's too late for me to help them, but I'm hoping through the podcast to reach some clinicians who maybe can help this kind of patients when they show up.

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Gal:  Wow, that sounds amazing, I can't wait to hear it myself! I will definitely link it in the episode notes.

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Mary:  Oh, well, thank you so much. What's the first topic you're going to talk about today?

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Gal:  I'm going to talk about the Refractive Index of Elemental Carbon, which is part of research that I did as part of my master's in Atmospheric Chemistry, and I will link the relevant paper in the episode notes. Mary, tell me, what do you think when I say the word aerosols?

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Mary:  Well, my immediate thought, because I grew up in the sixties and 70s is about the old aerosol cans everybody used to use for just about everything: hairspray, anything like that. And the controversy at the time was about the propellants used to push the chemicals out into the air. But then later on, aerosols became part of common parlance during the Covid epidemic, when they were talking about whether the virus was aerosolized or whether it was contact transmitted. But I'm sure that's not what you're talking about today.

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Gal:  That's true. Like, ever since Covid, everyone thinks they know what aerosols are because they think about that disgusting fog full of bacteria and viruses coming out of everyone's nose and mouth. And I mean, it is! These are aerosols. And also those spray cans you mentioned are also aerosols. But these are not the only aerosols in existence. Aerosols are just small particles floating about. And this includes also Atmospheric Aerosols, such as dust, smoke and sea spray. It's possible to collect aerosols from the atmosphere and chemically analyze them. It's also possible to test their interaction with the light in the atmosphere, both at ground level or on towers and from satellites. So like people measure how much of this light they absorb and refract. You can also create similar aerosols to those that can be found in the atmosphere, in the lab, and measure their optical properties in a controlled environment. The reason people do that is because the radiative budget of the Earth, or how much light is reflected, as opposed to how much light is absorbed by the Earth from the sun, is important for understanding things such as global warming and climate change.

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Mary:  So far, so good. I'm with you.

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Gal:  You know how people burn down the Amazon forest in order to make space for growing cows for meat, or soy, for example?

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Mary:  Yep.

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Gal:  Well, I was lucky enough to take part in an international multi-lab project that focused on the effect of smoke from such deforestation fires on the climate, on the local, regional and global levels. I was part of a team that determined the chemical composition of smoke aerosols that other teams collected at the Amazon Basin during deforestation fire season. Other teams were focused on the smoke's optical properties, to see how it affected the Earth's radiative budget. So we decided to do a collaboration where, on one hand, our lab found out what was the chemical composition of these smoke particles from the Amazon, and another lab measured their optical properties in the field. And another researcher who knew how to do this kind of calculation helped me figure out how to calculate the optical properties of these smoke particles from their chemical composition. And then the idea was to compare the results. So we could compare the optical properties that we calculated from the chemical composition to the optical properties that other people measured in the field. And to do such a comparison, we had to know the Refractive Index and the density of each and every chemical component of the aerosols that we measured in the lab. Density, as you might know, is measured by grams per cubic centimeter. And it's basically how much each milliliter of a certain substance weighs in grams. Refractive Index is how much light any substance reflects and absorbs. The reflection is called N and the absorption is called K. So each Refractive Index of a material is composed of N for reflecting and K for absorbing. The thing with smoke particles is that they are light absorbing because they contain a lot of black and dark carbonaceous matter. So this was a major component in our calculation of how these aerosols interacted with light. Mary, am I making any sense so far? Are there any questions?

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Mary:  So far, so good. I'm a little bit mind blown by the enormity of the task you're taking on. I'm thinking you're talking about Refractive Index, which must include refracted or bent light along with light that's traveling in a straight path, going in all directions from an object that's got reflective surfaces. The object itself is not perfectly round. It's got to have reflections going in every conceivable direction, and you're going to try to come up with an equation that captures all of that. Am I far off?

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Gal:  No, no, actually, you, you’re really spot on, as they say. Um, I didn't come up with this equation, actually, this is exactly the kind of equation that this other researcher taught me to do. And you can see it in the paper. It's called a Mie Calculation. 

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Mary: Okay. 

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Gal: And it basically is composed of all this stuff that you mentioned. I just didn't want to get into all those details and just talk about these constants that we had to have for each and every component in order to stick it into that equation that you just mentioned.

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Mary:  Okay.

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Gal:  Okay. So we knew how much of this dark carbon matter was in our aerosol samples. So we looked for its Refractive Index in the literature. The first hurdle was to figure out what this dark carbon stuff is even called, because it has so many different names in scientific literature. A name that might sound familiar to you is “soot”, a rather ambiguous term for the black carbonaceous aerosol emitted from partial combustion. Like, you know, the stuff you get…

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Mary:  In your chimney.

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Gal:  In your chimney, exactly! Black Carbon is another name, which is usually measured by looking at the aerosols’ optical absorption in the field, or on filters that have aerosols on them. Light Absorbing Carbon is a more general term for the light absorbing carbonaceous part of aerosols, which itself may include Black and Brown Carbon.

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Mary:  What is Black and Brown Carbon?

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Gal:  It's kind of like it sounds like. It's carbon-containing material that might be black or brown. And this depends on how fully combusted it got. If it's kind of partially combusted, it might be a bit browner. And if it's more thoroughly combusted, it might be black and kind of be like coal powder in a way.

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Mary:  All right. Well, that makes sense because, you know, different colors reflect light at different frequencies and in different ways. Okay. Thanks for the clarification. Yeah, thanks.

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Gal:  Thanks for asking. I really appreciate that because being from the field, it's sometimes unclear to me what is unclear to people who aren't from the field. So, um, if you thought these were all the names, there is yet another name called Elemental Carbon, which is most commonly measured by exposing aerosol samples to high temperatures and looking for how their optical properties change and what gases they emit.

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Mary:  Okay.

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Gal:  So while I was searching the literature, I found different Refractive Index values for each of these, which made picking one very complicated. In our paper, we ended up using Elemental Carbon because of the way it was measured by the labs who measured the smoke particles’ properties. I mentioned the Refractive Index, but also the density, which we needed also for each component, unfortunately, for Elemental Carbon published density values range from 0.6 to 2 grams per cubic centimeter. It's quite a range. And the Refractive Index itself was also a whole range, with N anywhere between 1 and 1.45, and K ranging from 0.4 to 1. The reason for this is the many kinds of conditions by which Elemental Carbon was produced for measurement, including the kind of fuel they used, the oxygen to fuel ratio, the temperature the fuel was burned at, and the combustion efficiency. And nobody by that point ever measured these values for Elemental Carbon from the burning of wood, not to mention a whole rainforest.

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Mary:  Oh, boy. I'm sitting here trying to, um, arrange all these variables in my mind. How did you handle that?

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Gal:  I also wanted to ask you if you ever ran into a situation where you had a large range of values to choose from.

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Mary:  Well, yeah, I suppose I have, probably. My go-to method is to write everything down on a strip of paper and put it in a hat and then draw one out. But I think you probably did something more accurate, right? How did you, how did you go forward with this complicated issue?

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Gal:  Well, I was a master's student, so I just went and asked my supervisor.

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Mary: Yay! 

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Gal: And he said I should use the commonly accepted Refractive Index value of N equals 1.5 and K equals 0.47 with a density of 0.2 gram per cubic centimeter.

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Mary:  That sounds a little bit like drawing it out of a hat.

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Gal:  Kind of, because, I mean, I tended to trust him because I was just a master's student and he was a professor. 

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Mary: Right. 

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Gal: But, you know, when he gave me a reference to an article some of his collaborators wrote that used this value, I looked at the paper and I wanted to know where this value came from, so I started following the quotes. This means I went to the bibliographic list of the collaborators’ paper and searched for the article they quoted. Then I looked at that paper, and there this value was also referred to as “commonly used”. I went to the article that that article cited and the same thing happened again. Back and back in time I went, until I reached a paper from the 60s,, which I sadly can't locate anymore, of a fellow so dedicated to accuracy that he dug and dug around until he found that the origin of this value is, in fact, a typo!

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Mary:  Oh, that people have been using it. Were they getting pretty good results?

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Gal:  Reportedly.

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Mary:  Okay.

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Gal:  Well, lucky for everyone involved, two fellows called Bond and Bergstrom, published in 2006 an article called Light Absorption by Carbonaceous Particles: An Investigative Review. I love this title. It was just what I needed.

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Mary:  Yeah. Perfect.

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Gal:  There they collected the density and Refractive Index of Elemental Carbon from various literature sources, and showed that it changed as a function of how loosely packed the measured particles were and how hot the flame was that created them, which affected the ratio of graphite to other carbon matter in them.

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Mary:  Right.

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Gal:  But where on these curves did our Elemental Carbon fall? At this point I was very confused. A mere master's student, I couldn't make heads or tails of this information, and I went for advice to an older and more experienced scientist. Dr. Yoram Kaufman was on sabbatical from his position at NASA in our lab, so I asked him what values for the density and Refractive Index of Elemental Carbon I should use out of the jungle of values, especially since the most commonly accepted one of them was based on a typo. He gave me a Yoda smile and told me that if I'm so lost looking for a variable for my model, the real story is the variable and not the model. And this is what I should write about.

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Mary:  Wow, that's a great idea.

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Gal:  Right? It was such sage advice.

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Mary:  Yes.

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Gal:  I consulted my supervisor and we decided to turn the paper on its head: Instead of trying to verify the model by using some bogus value for one of its main components, we'd assume the model, which had been successfully used dozens of times before, was valid, and used it to extract more realistic values for the density and Refractive Index of Elemental Carbon, specifically from deforestation fires in the Amazon, by comparing the optical measurements in the field to the smoke's optical properties that we calculated from its chemical components. 

Up until that point, the leader of the lab that measured the smoke's optical properties in the Amazon during the forest fires wasn't too interested in this article. He was totally fine with me being the first author, which means the one appearing in the citations, and he was very slow in replying to our request for data and information. But the moment he saw the draft I wrote with the Kaufman inspired idea of turning the tables on the model, he stopped replying altogether, and about a month later sent us a paper doing the exact same thing, but with more mathematical complexity than I could do, and with his name as first author. He tried to scoop my work!

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Mary:  Well, you're just a master's student after all, right?

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Gal:  Exactly.

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Mary:  It's Watson and Crick all over again.

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Gal:  Yeah, like and Rosalind Franklin wasn't even a master's student, you know? She had her own position and everything.

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Mary:  And they're still saying it. When was it Crick died? They were still saying, you know, “the discoverer of DNA”. Well, you know, she, she's autistic because she figured it out by visualizing the shape.

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Gal:  Wow. I didn't know that.

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Mary: It's all visual brain work. Same with the… the man who discovered benzene had a dream of a snake eating its own tail.

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Gal:  Yeah, you learn it in at least three different courses when you study Chemistry.

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Mary:  Oh, I know, isn't that right? I took just enough Chemistry to become a doctor, and I, I learned that one.

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Gal:  So while I was a mere master's student, I'm glad to say that my supervisor stood by me and defended me like a mama lion fighting for her cubs. He brought my case for arbitration with the professor in charge of the entire collaboration, and it was agreed we would each publish a separate paper. I'd publish this paper without the mathematically inclined investigator who tried to scoop it, and he’d publish a very mathematical paper without me.

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Mary:  Makes sense.

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Gal:  Well, he never did. Because without the scoop, what's the point even? And it's a shame. I'm sure the additional maths could only have benefited the community in the long run.

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Mary:  Absolutely.

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Gal:  Yeah. Well, in case you were wondering, the values we came up with for Elemental Carbon from deforestation fire was 1.8 gram per cubic centimeter for the density, and a Refractive Index of N= 1.87 and K = 0.22. 

A few months later, Dr. Yoram Kaufman was killed by a motorist while cycling in the US. We dedicated the paper to his memory. 

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And on this note, let's take a little break.

After the break: Molecules are on the spectrum, Self-Assembled Monolayers and dinner with Professor Evil. 

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We're back with the Autistic Rant Hour, and for our second part, I want to talk to you about some research I did as part of my PhD in Biophysical Chemistry. The paper is also linked in the show notes. Mary, are you up to hearing about measuring the electric fields at coated electrodes using vibrational spectroscopy? I promise there will be some delicious tea spilling in the end.

Mary: I am so ready, and I'll tell you why. I was trying to advise a patient about whether or not they should use an experimental hip replacement.

Gal: Mhm.

Mary: And, um, I read the specs on it. They were all done by an engineer. It was an engineer, in fact, who wanted to have it placed in his hip because it had the strongest metal ever. And, um, it turns out that hip replacements don't fail because of broken parts. They fail because the tissue at the surface of the metal does not join.

Gal: Mhm.

Mary: It's an interaction between human tissue and metal that was the issue. So I'm very excited to hear what you have to say.

Gal: Okay, cool. So we'll find the connection to the hip replacement in a moment. And I'll start at the beginning.

Mary: Yeah. Start at the beginning.

Gal: So this research was about electric fields at coated metal interfaces. In many cases you want to change the properties of some metal surface by coating it with a Self-Assembled Monolayer. It's basically a layer made out of identical molecules that have one side that attaches itself to the metal, and then they kind of organize themselves like a field of wheat on the surface of the metal. This kind of thing is useful, for example, for protecting the metal part of something like a hip replacement. It's also useful for coating electrodes if you want to attach something like a protein to the electrode, which was what I did in my research. An important thing in such cases is to know what is the electric field at the interface between the electrode, the Self-Assembled Monolayer, and the medium it's in. Normally some kind of aqueous solution. So basically water with stuff in it, which is kind of similar to the hip replacement situation because blood is basically an aqueous solution, water with stuff in it and it's full of proteins too.

Mary: There you go. I knew I made the right decision when I told him not to do it.

Gal: Well, I mean, the thing is that, yeah, I mean, if you have exposed metal next to all sorts of proteins, like the stuff you have in your blood, the proteins just kind of attach themselves to the metal in like an unhelpful way. They kind of like lie down on it and spread out on top of it instead of keeping their form. So this is one of the reasons we, we want to coat the metal with something like a Self-Assembled Monolayer.

Mary: All right.

Gal: So I said we didn't want to just coat the metal with the Self-Assembled Monolayer. We wanted to know what the electric field at the Self-Assembled Monolayer was. And our approach to this was to use the vibrational stark effect. But what even is this?
So I don't know if you realize that, but molecules are made of atoms, and these atoms in the molecules aren't just sitting still. They're vibrating. The whole molecule is vibrating. There are all sorts of vibrations. There are vibrations where the atoms get closer and then further from each other. There are vibrations where they do a motion hilariously called scissoring. And what was interesting for me in my research was the vibrational frequency. Or how fast are these atoms vibrating against each other? How fast are they, for example, getting closer to each other and further from each other? Most of the time people are interested in such a thing, because each molecule and each pair of atoms or a group of atoms have a different vibrational frequency. And there are also different ways, in very specific ways, that they can move from one vibrational frequency to the other. The result is that if you shine a light, in this case infrared light, through some medium containing molecules, such as a solution of these molecules, you get something called a vibrational spectrum. A spectrum being not a scale, as we all know as autistic people, but a collection of frequencies. Each frequency with its own amplitude or strength. If we subtract the vibrational spectrum of the medium without any other molecules in it from the medium with the molecules in it, we can get the vibrational spectrum of the molecules of interest. And each molecule has a different vibrational spectrum. It's a bit like a fingerprint, or like how each autistic person is a different person, because we each have just the specific traits that we each have at a different kind of strength. Mary, am I making sense to you? This is pretty crucial for understanding all the rest of it.

Mary: I am glued to my earphones.

Gal: Aw, thanks. Okay, so while most molecules always have the same vibrational spectrum, some chemical bonds change their vibrational frequency based on the electric field existing in their environment. I guess like how our environmental conditions can change how, for example, dyspraxic are able to talk we are. For this research, we took something called Mercaptobenzonitrile that has, as you might gather from the name, a nitrile group at the end of it. And a nitrile group is basically a carbon connected to a nitrogen with a triple bond. This triple bond is so full of electrons that it's just very sensitive to electric fields, and its vibrational energy changes according to the electric field it’s experiencing parallel to the bond direction. Here is the equation that describes this: μ, the vibrational frequency of the bond, equals μ0 or μ naught, which is the vibrational frequency of the bond without any electric field, minus 𐊅μ, which is the sensitivity of this chemical bond to electric fields, times the electric field. Mary, I just want to make sure here that I'm explaining this okay.

Mary: Again, I'm fascinated. I, between jobs, was working in natural healing. And one of the fields I studied was sound vibrations through the body, trying to elicit certain molecules to vibrate at their optimum range. So I'm picturing stuff now that's… I'm going to have to do more research after. This is wonderful.

Gal: But if you were using music to make molecules vibrate, I'm afraid you were using the wrong kinds of vibrations. And also in the wrong frequencies. So like what you want to do, if you want to make molecules vibrate, is shine infrared light on them and not make them listen to music.

Mary: We were going into infrasound. We were going into very low sound frequencies that actually do vibrate tissue. And that's why we chose that.

Gal: Oh, like the tissue as a whole. Like the bones.

Mary: Yeah, it was pretty arbitrary. We… It was like drawing pieces of paper out of a hat. They decided to use the frequencies of the molecules by their molecular weight. So if their molecular weight was one hundred and twenty seven, you would use the frequency one hundred twenty seven when you vibrated the body. It was wonderful. You go on because this is real stuff and I love it.

Gal: Okay, this is hilarious. And I mean, to be honest, like, I also had my hippie phase and I used to do like sound meditations where I hummed in frequencies that I could feel were vibrating my bones or like my skin. So I'm all into that. I just like, I think it's hilarious. Also, like the atomic mass of molecules is more like in the thousands because we're talking about proteins that have so many atoms in them. And then it will be quite high frequencies actually.

Mary: Yeah. We never got to the protein level. We did calcium and phosphorus, if you had a bone problem, and maybe iodine if you had a thyroid problem. It was yeah, yeah, yeah…

Gal: Well, I mean, cat purring is supposed to help cats repair their bones, so maybe accidentally you landed on the right frequency.

Mary: There you go! There you go! We actually had results in people, but that, I think, had more to do with the placebo effect, which might enter into one of my podcasts. But let me go back to yours.

Gal: Okay. We had a little fun break, and now let's go back to the thick of it. So μ0, that I mentioned before in the equation, is also known as the zero field frequency. So basically it's the vibrational frequency of the bond we're looking at, in this case the nitrile bond, without any electric field around it. The problem is that the value of the zero field frequency μ0 itself depends on the environment the bond is in, because almost in any environment, there is something exerting some kind of electric field on the bond in its direction. So basically, if we have a nitrile or a mercaptobenzonitrile embedded in a protein or in the gas phase, or in a frozen glass surrounded by an organic solvent or in aqueous solution, each of these cases are going to have a different zero field frequency. Unfortunately, or maybe fortunately for me, as a researcher wanting to publish papers, nobody ever measured the zero field frequency for mercaptobenzonitrile in a Self-Assembled Monolayer. So basically, when we were trying to calculate the electric field on the surface of the metal that was coated with a Self-Assembled Monolayer, we had nothing to refer to. People had measured it before in an aqueous environment or in a frozen solvent glass. But we just couldn't use that for our case because all sorts of factors affected it. For example, the fact that the Mercaptobenzonitrile was attached to a metal already affected the electric field surrounding it. The fact that it was surrounded by other mercaptobenzonitrile molecules, all organized in the same direction, also affected its zero field frequency. And another thing that affected it was hydrogen bonding with the aqueous solution it was in, so with the water. All of these can affect the nitrile stretching frequency that we needed in order to calculate the electric field at the Self-Assembled Monolayer surface. We could measure the effect of the metal bonding and the packing of the Self-Assembled Monolayer by measuring the frequency of the nitrile in the Self-Assembled Monolayer coating the metal, without a solution. But for the solution, we had to compare solid Mercaptobenzonitrile with Mercaptobenzonitrile dissolved in a buffer without the metal and the packing, and then assume they can just be added to each other. This was quite a big assumption in itself.

Mary: Big. Huge.

Gal: Right? Well, we made it. And then there's 𐊅μ that I mentioned before, which is the sensitivity of the nitrile bond to changing the local electric field. It's also called the Stark tuning rate. And it had a similar problem. The original research group that conducted such measurements published a table in a paper by Fafarman et al. I will also link it in the show notes. In their paper, you can clearly see that this value is different when measured in an organic solvent versus in aqueous solution, but they still claimed it was the same. They actually published a table that shows that there are differences greater than fifteen percent, and then wrote in the text that there was no difference. Alright, I just looked at their numbers and took them more seriously than the words. I was measuring in an aqueous buffer, and there was no aqueous solution data for my compound Mercaptobenzonitrile. Only in organic solvent. So I had to infer from another compound that was measured in both organic solvent and the aqueous phase, and assume that the ratio is the same for both compounds. And that's another big assumption that I made for my calculations.

Mary: Mhm.

Gal: Is it clear what I'm talking about?

Mary: Yes yes yes. Go on.

Gal: Okay. So now we could measure the frequency. And based on the greatly extrapolated values that I mentioned, calculate the electric field at the interface of the Self-Assembled Monolayer and the aqueous solution. But we don't just want to get a number by measuring. We want to see if we can get the same number as theoretical calculations yield so that we can see if in the future we can just calculate the value instead of having to measure it each time, because measuring is expensive and complicated. Mary, if you remember from the first part of the episode, this is kind of the same situation I was in there.

Mary: Right, right, right.

Gal: Also there, we wanted to calculate something and see if it gives us the same value as something that we measured, right? So here we're trying to do that again but for a completely different field. We get an equation that calculates the electric field at the Self-Assembled Monolayer interface. And we try to see if we get the same value by measuring. The equation, that we also call an electrostatic model, calculates the electric field at the Self-Assembled Monolayer interface, with the aqueous solution as a function of many variables and constants. Some of them are known and were reliable and repeatedly measured. Some of them just opened the door to more estimates, assumptions, and extrapolations.

Mary: Okay, so if you're trying to verify that a variable is accurate, you do a number of different measurements at altering only the variable and see if it falls out on a curve. You know, you can see how the change in conditions changes the equation. Is it something like that?

Gal: Yeah. Actually this is something that we did for some of the variables. And I will get to that at a later point. But first there was like the question of the constants. For example, the thickness of the Self-Assembled Monolayer. We needed that for this equation.

Mary: I keep forgetting you just taught me in part one that you can't trust the constants either, necessarily. So you go ahead and fill me in on what you did to investigate these constants in this equation.

Gal: Thanks. Yeah. I mean, that's why it's a story even.

Mary: Yes. Okay.

Gal: So for example, the thickness of the Self-Assembled Monolayer. We needed that for the equation. And this depends, however, on the length of the molecule the Self-Assembled Monolayer was built of. So we call that monomers. Or let's say in the wheat field metaphor it's a single wheat plant. And the thing is that they are not standing straight like wheat. They are tilted like wheat in the wind.

Mary: Okay.

Gal: So when they're attached to the metal, they're tilted, even if it's not windy or if there are no currents, this is just the way they stand. And the thickness of the monolayer depends on this tilt angle. Because if all the wheat, for example, is tilting in the wind, all the grains are going to be closer to the ground than if they're all standing straight. Right?

Mary: Right.

Gal: So the tilt angle was measured on gold for mercaptobenzonitrile and another similar Self-Assembled Monolayer made of a compound called thiophenol. And they turned out to have roughly the same tilt angle. But on silver, which was another metal we needed to use, the angle was measured for each of these Self-Assembled Monolayers by a different lab. And there was a huge discrepancy between them, which made me suspect one of them might be wrong. But at first, I had no way of knowing that. However, the plot thickens.

Mary: Oh boy.

Gal: While the electric field depends on the layer thickness, which depends on the tilt angle, I also noticed that when I was applying a certain voltage to the electrode, which is something I did in order to change the electric field at the Self-Assembled Monolayer surface, this applied voltage also changed the tilt angle by quite a lot. So there is a kind of feedback mechanism here that could change our entire results. But guess what? We just totally ignored it because by that point, my scholarship was running out and I had to write my thesis and the paper.

Mary: Don't you love academic science?

Gal: Right? I mean, at least we mentioned it in both the paper and my thesis.
Mary, how are you surviving so far?

Mary: You've blown my mind, but it's still with you.

Gal: So I hope you're ready for our next dubious variable: σ0, sigma naught

Mary: Okay, let's hear about this sigma naught.

Gal: It's very naughty, this sigma naught. It's the charge density just at the Self-Assembled Monolayer surface, at zero field, so when there is no electric field. The thing is that that's also affected by a bunch of things such as the charged head groups of the Self-Assembled Monolayer. Imagine if we're back in this wheat field. In each wheat plant, the head, like where the grains are, is charged. But because it's all submerged in aqueous solutions, so in water with stuff in it, we also have the charges of the ions and water dipoles aligned in the immediate vicinity of the Self-Assembled Monolayer surface.
And I'll explain: What basically happens is that those nitrile groups have some kind of charge distribution along their axis. So the nitrogen is slightly more charged than the carbon because electrons find it more attractive. This causes ions in the water solution to accumulate preferentially with positive ions or cations closer to the nitriles because they are more negatively charged. Also water molecules. They look like little arrows with an oxygen at the head of the arrow and hydrogens at the sides. And they also have a charge distribution. Let's actually say that they look like birds. The oxygen atom is at the beak and the hydrogen atoms are at the tips of the wings. The oxygen is super attractive to electrons and the hydrogens really aren't. And so the oxygen beak is kind of more negatively charged than the hydrogen wingtips. And so if we have this kind of somewhat negative charge at the nitrogens at the surface of the Self-Assembled Monolayer, we're going to have the water molecules maybe rearranging themselves, so the hydrogens are facing the nitrogens. Think of a flock of starlings soaring out of a wheat field, but you freeze the picture just a millisecond after they emerge. So all their fluffy butts are facing the grains. Am I making any sense here?

Mary: Oh you are. I'm picturing it all, and it's beautiful.

Gal: I love starlings. So with all those charges aligning around the surface of the Self-Assembled Monolayer, to find out Sigma naught or the charge density at the Self-Assembled Monolayer surface at zero field, what we had to know was at what electrode potential the potential at the Self-Assembled Monolayer surface was zero. I called it E0, the effective potential of zero charge, which was different from the value they tried to make me use: Epzc, the electric potential of zero charge of the bare metal. So basically each metal has a certain electric potential. And it also has a certain electric potential where its surface isn’t charged, and they measure it for the bare metal. But clearly this is going to be completely different when you attach a whole Self-Assembled Monolayer of molecules, which are themselves electric dipoles to the surface of the metal. So while it would have been maybe more convenient for my supervisor had I used the Epzc, or potential of zero charge of the bare metal, I actually wanted to use the effective potential of zero charge, which was the one with the Self-Assembled Monolayer already attached to the metal. What I did to measure this was, and this is the part where I did what you mentioned before, I changed the potential I applied to the electrode and plotted the nitrile’s vibrational frequency versus the applied potential. As you remember, this frequency depends on the electric field. I got a linear plot and could get the potential at which the electric field at the position of the nitrile group is zero, by basically looking for the electric potential that I'm applying to the electrode, where the vibrational frequency of the nitrile is that zero field vibrational frequency that I used so many assumptions to get to a few minutes earlier in this episode.

Mary: Gotcha.

Gal: So this would give me supposedly the effective potential of zero charge E0 for the entire metal Self-Assembled Monolayer-solution system. I got this by subtracting the intercept from the half assumed zero field frequency μ0 and dividing by the slope. Please see the paper if you really need to see all the gory details of why it tracks, mathematically speaking. 

Okay, but now we wanted to compare this value to another value calculated from a mathematical model. Because this is apparently what we do all day. The effective potential of zero charge E0 could also be estimated by calculating the change in the work function of the metal, 𝛟, due to the coating by the Self-Assembled Monolayer. I'm not going to get into it in great detail. Please read the literature if you really want to know. What I will say though, is that this value also depends on the tilt angle, of course. So I ended up comparing the value from this calculation to the value we measured, and discovered that the tilt angle we had for Mercaptobenzonitrile and silver was indeed wrong, and that it was in fact rather similar to that of Thiophenol and Silver, as I suspected originally. So hey, at least we got that out of it. 

Okay, Mary, so in conclusion, for my measurements, I was working with an equation whose knowns were extrapolated, and for the mathematical model, I was taking the resulting values from my measurements and matching them to an equation where we treated a variable as a constant because we ran out of time.

Mary: Yep, that sums it up.

Gal: At least we could get a reasonable value for this concept by comparing two mathematical models. And this unfortunately, is how science works.

Mary: Yep, it's a work in progress. As are we all.

Gal: Indeed. I'm going to take a minute of your time to remind you about prepped.to, a website where you can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is totally free without any membership fees or premium tiers. The web address is prepped.to . prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. Another way you can help keep the lights on at prepped.to is by donating as little as one euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to - Know before you get there! 

Okay, Mary, I promise to spill some tea, and I'm going to! This part of the episode I call Dinner with Professor Evil.

Mary: Good name.

Gal: Tell me, what do you know about the process of publishing scientific articles, also known as papers, and peer review?

Mary: About that I only know from other people. I understand it's very difficult and very political. What do you have to say?

Gal: Well, basically, scientific papers need to be peer reviewed to be published. Let's say I found something of scientific importance. I can't just go and publish it on my own. Well, I mean, I can, I guess, if I'm a physicist, they just upload it all to arXiv.org. But if I want it to be in a scientific journal and have some kind of credibility, I have to submit my paper, and then if the editor finds any merit in it, they will send it to peer reviewers. These are experts in the specific field this paper is written in, who are going to read this paper thoroughly and figure out whether it makes any scientific sense. And they will also write a review where they either accept the paper as is, reject it completely, or, most commonly, they have all sorts of comments and stuff they think should be included and clarified before it can be accepted. So while I was researching how the vibrational frequency of nitriles in all sorts of environments changes and indicates the electric field in these environments, I was plagued with a peer reviewer that kept rejecting my papers for no apparent reason. Sure, he made all sorts of claims about the quality of my findings, but frankly, they were bogus. One of my collaborators recognized his writing style and told me who he was, and he was the biggest professor in the field, and for a good reason. Someone who did his PhD with him told me that he used to send his students to conferences with orders to discredit anyone who gave a talk in their field.

Mary: Wow.

Gal: Yeah.

Mary: You know, bogus is a good word. It starts with B and it ends with S.

Gal: I love it! Well, the thing was, because he was so known in these circles, he was always selected as a peer reviewer. And apparently he just rejected any articles anyone else submitted. This happened to me twice. I'd submit a paper for review and it would get rejected by Professor Evil. I'd submit the same paper to another publication, requesting specifically to exclude him from the peer reviewer pool, and the paper would be accepted without any major edits.

Mary: Wow, it's getting worse.

Gal: Well, it can get even worse. So one day after the second rejection, Professor Evil was a guest of my department and gave a seminar. To my horror, I saw my graphics, though thankfully not my numbers, on his charts.

Mary: Wow, that's pretty low.

Gal: Right? I mean, not only did he reject my papers to eliminate the competition, he also stole my data visualization style, and he was so brazen as to present it to my face.

Mary: And to your peers.

Gal: And to my peers, who also actually knew my… knew my graphic. But the brazenness didn't end there, oh, no. Later that evening, the head of the department invited us and Professor Evil to dinner at a fancy restaurant. He sat to me next to the man himself.

Mary: Oh, no.

Gal: We dined. The professors drank several beers, and all the while Professor Evil was telling us the tragic story of how hard it was for him to get the funding he needed to keep his research group afloat. 

Mary: Ah ha!

Gal: Ah ha indeed. After dessert, already rather tipsy, he leans towards me and quietly tells me: Do you see now why I have to compete with someone like you?

Mary: Oh, boy. At which point did you hurl a dagger into his heart?

Gal: Well, that would not have been legal, so I just had to, you know, remain with my thoughts and think about how he phrased so eloquently “compete with” instead of just “steal from” and “someone like you” instead of “a measly PhD student at the bottom of the pecking order”, that he saw himself obligated to trample all over in order to stay afloat.

Mary: That is academic science.

Gal: Unfortunately, it really is. 

We're nearing the end of the episode. Do you have any concluding remarks? Anything you want to still ask about something you didn't understand or you just want to comment about or share some similar experiences?

Mary: Well, I'm going to ask, but I think I already know the answer: Were there any consequences this person, this Doctor Evil, ever paid?

Gal: Not to my knowledge, but to be fair, I didn't go on in this field, for obvious reasons. So I guess one thing he got out of it is to get rid of this competition.

Mary: Oh, dear, he won! Oh, no! I can't… My autistic sense is vibrating.

Gal: Exactly. Yeah, he did win. But I mean, I did go on to research electroactive bacteria, which were very thrilling.

Mary: That I want to hear more about at another time.

Gal: At another time. Exactly. 

So this is it, dear listeners. This was our episode about exact sciences: or are they? Thank you so much, Mary, for being here and, you know, giving me some moral support.

Mary: I enjoyed it thoroughly. Thanks for inviting me.

Gal: And I'm really looking forward to hearing your podcast too.

Mary: Yes. Remember: Clinical Misfits, coming soon.

Gal: So exciting. And thank you, dear listeners, for being here and listen to all these science mumbo jumbo. I'm Dr. Gal Schkolnik, pronouns: They/Them, and today I was joined by Dr. Mary Sims, pronouns She/Her. Please see the show notes for the link to her podcast. 

This episode was produced and edited by yours truly. Theme music by Lir Lutau Shahar. Lir is a composer and sound designer who loves to make whimsical and magical music. Listen to more of seas stuff at @lir_lurim on YouTube or SoundCloud. For collaborations, see contact in the show notes.

My cat Merlin has some vocal vibrations to share with you in case your bones or soul need healing.

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‍Gal: Welcome to The Autistic Rant Hour, the podcast where we rant and infodump about the aggravating, the inexplicable, the unjust and infuriating in all fields of life, one episode at a time. The Autistic Rant Hour is part of the Autistic Culture Podcast Network. I'm Dr. Gal Schkolnik, pronouns: They/Them.

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On our Medical Gaslighting episode, we discussed what happens when you go to a medical professional, when they are misinformed about being autistic and how it may affect your physical health. But what about going to a mental health professional who has zero information about what it may mean when you, their patient, may be autistic?  I'm Dr. Gal Schkolnik, pronouns: They/Them, and today I'll be joined by Rey Rissanen, pronouns: They/Them. Rey is an artist that creates beautiful crochet designs, including crochet stim toys and houseplants, which you can see on their Instagram @rainbowrey.crafts that has also a link to their other artwork in their bio. I'll link it all in the show notes. Together with Rey, we will rant and tell you about the horrors of needing help with your mental health and, instead of getting it, getting misdiagnosed, gaslighted, and harmed by misinformed mental health professionals who don't know what it means to be autistic, what an autistic adult even looks like, what the needs of an autistic patient are, and how to differentiate different mental health conditions from just being a traumatised and burnt out autistic person. Great to have you here, Rey! 

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Rey: Hello. 

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Gal: We'll start in a moment. But first, content warning. We will talk about mental health issues and there will be mention of self-harm, suicidal ideation, eating disorders and medical gaslighting. So please take this under advisement when deciding whether you want to listen to this episode.

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But before we begin, let me tell you about something we can actually do about one of those aggravating things. I'm sure you know that moment you walk into a new place and realize you have no idea how to get what you need. And the sensory environment is already overwhelming you. I'm founder of Aut2Aut, a registered nonprofit that provides free digital solutions and platforms by and for the autistic community. One of those is prepped.to, a website where you can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is totally free, without any membership fees or premium tiers. The web address is prepped.to 
prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. Another way you can help keep the lights on at prepped.to is by donating as little as one Euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to -  know before you get there.

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This episode is extra special, because Rey is also the person who came up with the idea for prepped.to. Rey, would you like to tell us about your personal story and how you came up with that?

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Rey:  Yeah, so I got this idea from my childhood, actually, from something that my mother made for me. She used to make these little booklets for me to be able to prepare for new situations. For example, going to the doctor's or going to the airplane for the first time. And I wasn't even diagnosed at the time, but my mother just noticed that I'm sensitive and I need preparation and that was really helpful for me. We read these booklets multiple times before we went to the new place, and then I could handle it really well. And as an adult, I've been hoping that there would be an adult version for this because new situations are still hard as an autistic adult. And I had this idea that there could be an app or a website for this, where autistic people could help each other. And yeah, I told this idea to Gal. And now, thanks to their hard work, this actually exists. It's very exciting.

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Gal: Aw, thank you and thanks for sharing this sweet story with us. Our listeners can also read about this story and see Rey's beautiful illustrations of it in our blog at prepped.to. If you want to hear about all the hard work that went into founding the nonprofit, you can listen to our bureaucracy episode. 

But let's move on to the main event of this episode: being autistic while trying to get help with our mental health. Rey will soon share their experiences with us, but I wanted to get us started with some of my adventures with psychotherapists, because I think it's important to note that while things can get seriously harmful when you get stuck in mental health institutions as an undiagnosed autistic person, even just trying to get therapy can go pretty wrong.

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My first experience with psychotherapy as an undiagnosed autistic adult was when I was in my late twenties, and I just found out, not only other people had emotions that are different than my own, but I could also affect their emotions with my behavior. Shock! I was in a long term relationship, and it turned out that I was lashing out at my partner in a way that was hurting his feelings, and he told me about it. I had no idea. And of course, I also had no idea I was autistic. I didn't realize I was basically having meltdowns and lashing out randomly at the closest person to me, which was him. And when he told me that, I was really shocked. So I decided to get some help. Back in the day, the only help you could get was psychoanalysis. And so I chose some therapist and she turned out to be pretty great. We had really interesting conversations, and she really helped me figure out some stuff about my relationships with my mom and some of the things that brought me to where I was at the time, like the stuff that triggered me that were related to the way I was raised by my mom. And she also was very helpful at teaching me how to recognize when I was lashing out first after I lashed out, then during and then before it so I can put a foot on the brake and figure out if I can say this or do whatever I was going to do or say in a way that will be less hurtful for the people I love. And that was really great. The problem was that at some point, I wanted to stop talking about my mom and how she raised me and start talking about my relationships with other children. As a child, I was boycotted twice in two different schools and it was really difficult. And I thought I was traumatized by these things and I wanted to also discuss them. But she insisted that everything that happened to me with other children was because of my mom. There was never a mention or suggestion that I might be neurodivergent or autistic. We're talking early aughts, so like, basically, neither she nor I had any idea about this. So yeah, at that point I realized that actually this was not going anywhere new and I had to end the therapy and we parted amicably. It was okay. I took away what I learned and just left what I didn't need.

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And then the second time I decided to consult a psychotherapist was when I'd come to the conclusion that I was abusing romantic relationships like other folks abuse drugs, and I needed help stopping doing that. I guess now I know that people were my special interests, but like back then I didn't know that. And I just felt I kept getting into romantic relationships that I didn't necessarily need to get into, all the time. The therapist didn't realize I was autistic, also didn't know that people can be autistic folks’ special interests. And she gave me an actually pretty useful mindfulness exercise so I could stop ruminating about every single thing my partner ever said. And that was good in itself. But then apart from that, she basically wanted to help me become a better partner, which was the exact opposite of what I came there for. So that was a bust.

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And then the third time I went to psychotherapy was when I was socially rejected by my labmates during my postdoc. So I was working in an environmental science institute where, I don't know, you kind of expect people there to be nice, nerdy, maybe a bit kooky too. But basically, apart from one lab technician, everyone in the lab I worked at were always taking like a good two metre distance from me, just in case. I don't know why. I mean, because I was autistic, supposedly. People weren't treating me like a lab mate at all. And also, just when I was walking around the campus, people would stare at me. There was this really beautiful cherry tree in the middle of campus that I really liked looking at, and people just really stared at me when I was just hanging out by the tree. It was not great, and I decided to go to therapy. I chose one that seemed queer to me. I wanted to tell her how this kind of rejection from my labmates dredged up all my unaddressed social trauma from being an undiagnosed autistic child, trying to make friends in allistic dominated schools. Basically the same stuff that my first therapist was trying too hard to pin on my mom. The problem was that this therapist was super focused about my facial expression. She was always disappointed by the fact that I was smiling during our sessions. So I came to this therapist to help me deal with current and past rejection by society and relations. And her reaction was to criticize my facial expression. And she didn't realize this expression was just an autistic fawn reaction because I felt uncomfortable and stressed and nervous when I was in the session. I also suggested at some point that I might be autistic, because that was during the beginning of my journey, and she wanted me to educate her about it during my session time. Eventually, I came to the conclusion she was doing more harm than good and left her.

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Okay, I think I've spoken enough about my adventures with mental health providers. Our guest, Rey, has completely different experiences with mental health services. Different, but definitely not better. Rey, could you tell us how your mental health journey started?

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Rey:  So, um, I would say my mental health issues started in my early teens. As a kid, I was already having a lot of sensory overload and some social issues at school, but I was still mostly a happy kid. But then as a teenager, there started to be so many changes. Like somehow there were suddenly so many new social rules I didn't understand. My body was changing. That was really hard for me. So I started to have panic attacks and like dissociations, which I now think probably were partly shutdowns and meltdowns, but I started to go to the school counselor because of this. And when I went to high school, I got my first real therapist and she was a really nice person, but it was not very helpful because my issues were because of my undiagnosed autism. And my high school was a really big school. I really liked it, but I was constantly exhausted and overstimulated from all the people and noise. There was a lot of socializing and new people, and things kept getting worse. Throughout my high school, I was extremely stressed and anxious, but I still managed to graduate on time. And yeah, after graduation, when things kind of calmed down, I started to become depressed for the first time, which is probably the start of my autistic burnout, I would say. After high school, I went to an art school for two years and kept getting more depressed and more burnt out, even though the school was very nice. And after these two years, I moved to Berlin, hoping that the new start would make things better. But, um, it didn't.

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Gal:  Yeah. In our episode with Simo we discussed medical gaslighting. Would you say this is also relevant to mental health?

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Rey:  Um, unfortunately, yes, I have had quite many experiences like that. And now especially thinking about two doctors that I met. And a little backstory to this: The time was the end of my first year in Berlin, and things were worse than ever for me. It had been a hard change to move to a different country, obviously. And it was also Covid times and things were uncertain. I was worried. I was working in a restaurant that was not a good environment for me. Yeah, that's when my autistic burnout started getting really bad. I got into a mental health crisis where I was severely depressed and anxious. I was self-harming because of these issues, trying to deal with them. And I also started getting suicidal thoughts at this point. And at work I was even hearing some voices calling my name when nobody was there. So I realized I definitely need to do something about this. And yeah, I went to a doctor. So this first doctor, my first appointment with him was okay. He gave me one week of sick leave and told me I can come back if I need more. And I did, but the second time he refused to give me more sick leave because he said it's bad that I am isolating myself and it's ruining my relationships, which is weird in one week, I don't think so. He said that work gives me structure and I should just go back to work. That will help. It's better instead of staying in bed all day and not showering. That's what he said. Which is strange because I never said that I was doing that. That is so weird. But to make matters worse, after this, he started to explain to me in detail about his own typical work day. Like how he wakes up early and then goes to work and does many things and his life is so good. So I should just do as he does. And so that was it with this doctor. So yeah, I definitely was not able to go back to work. So I had to find another doctor, which I was hoping would be better than the first one, but I think the next one was equally bad, only different. He was not very informed about mental health issues either. He asked me if I have issues with my family and I said: No, actually my family is really supportive. And he said: Okay, well, you can't really be depressed then. Also, you are too young to be depressed and you don't look depressed. And actually, you should also go off your meds because you don't need them.

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Gal:  I mean, okay, and you don't look like a doctor.

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Rey:  Yeah. Not really. I don't know how he came to these conclusions, but that was definitely not helpful. At least he gave me the sick leave when I asked for it for another week or so. But I still needed actual help, and I definitely didn't want to go back to this doctor either. So I had to find a third doctor, and luckily this doctor was competent. I told him everything that was going on with me and he said that my situation is so serious I have to go straight to the hospital. That's how bad it was actually. And that's how I ended up in the psych ward for the first time.

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Gal:  What was it like being in a hospital? What did you have to deal with?

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Rey:  I also ended up going there many times in the following years after that, but I would say the first time was really overwhelming for me. At first, I was really dysregulated for about one week because it was all new environment and routines and new people, but it was still an improvement to my situation before. Um, I didn't have to be alone with my thoughts and that was a relief. And I started to get used to it eventually. And then there were actually some really helpful things about it. There was a strict daily routine, which I wasn't able to maintain at home, and I didn't have to take care of any daily chores. My food and my medication was delivered to me at the same exact times every day. And I think the best thing about being in the hospital for me, has been to be free of demands and expectations, because I really struggle with those. But that being said, there were also some things that were really hard for me. For example, I had to stay in a four-person room most of the time, and there was very little privacy and personal space, and just the other people being in the room with me bothered me. But also some of them were really loud and just causing general chaos.

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Gal:  That doesn't sound very helpful. It's kind of counterproductive.

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Rey:  Yeah it was. I remember especially this one time, it was at night, one of the patients, who was apparently also a doctor as her profession, she convinced another patient who was having a panic attack, that they are having a heart attack and also called the ambulance, the fire department and the police to come to the ward.

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Gal:  Why?

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Rey:  I don't know. But luckily sometimes it was also rather quiet and boring. But there were always people around. I tried to look for personal space elsewhere than my room. I was allowed to take walks in the hospital area, so I did that a lot. I spent time in some therapy rooms when they were not being used, and there was also a bathroom with a bathtub that I could use. So I took a bath almost every evening and it was a nice time to be alone. And when I was in my room, I was just wearing my headphones most of the time, often listening to music, trying to focus on some arts and crafts if I had the energy. Sleeping I wore earplugs and eye mask, but sometimes that was also not enough to make the other people's noise go away. Some people screamed in their sleep.

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Gal:  That sounds super stressful. Sharing a room with three people you don't know is just a lot.

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Rey:  Yeah, it was a lot. Usually just being in a space with so many people is hard for me. I guess I was able to handle it somehow because I was already doing the worst that I possibly could, but it still was definitely not helpful for me that the people were there. Luckily, there were also some nice people for when I had the energy to socialize. Often in the evenings we would play some games. Sometimes we ordered pizza together, just something to take our minds off our problems for a while. And that was really nice. Oh, one time I even kissed a girl, my roommate, on the roof of the hospital, which is a nice special memory. I remember watching a movie where something like this happened, and I was really annoyed by it because I thought it was unrealistic and it would never happen. And I thought the movie made being in the hospital seem like a nice holiday. So I guess I was wrong. Only about the kiss, though. It's definitely not like a nice holiday to be there. And because there was also quite a lot of gaslighting and I would say straight up neglect in the psych ward, unfortunately.

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Gal:  What do you mean by neglect?

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Rey:  So when I was in the psych ward, most of the time it was still the Covid times. So there was less program than usual, I think, and a lot of precautions. Um, but there were also just very few psychologists in the ward. The first time I was there, there were a few psychologists at the ward. But a year later, one time when I went there, there was none. Like there were no psychologists anymore. Everybody had quit.

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Gal:  What?

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Rey:  I don't know what it had to do with: Was it because of Covid or budget? But it was bad. And there was one psychologist that was working for all the psych wards, which was like five different wards. And then there were two short doctor visits a week and maybe one group activity per day if we were lucky. So there was not really a lot going on. I understand that they had limited resources, but it was really the worst time ever to go to the hospital thinking that I will finally get help and I will get to talk to somebody, and then find out that I will just be ignored or there will be nothing happening. They were just keeping me there.

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Gal:  Ugh, that's terrible.

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Rey:  Yeah. So the doctors often, they didn't really care what I had to say. And this psychologist was nowhere to be found. I tried my best to practice what I'm going to say when the doctors come. But when I said what I had to say, at best they listened to me and just gave me more medication. And at worst, they completely dismissed what I had to say. Like, for example, one time when I was really doing really badly, I was really desperate, I was crying. I said, I feel like I'm going to hurt myself. I don't know what to do. And they told me, don't worry, it's just your borderline personality disorder, which they had diagnosed me with earlier that year. She would also not say to somebody with a broken leg, like, don't worry about the pain. It's just because of your broken bones. That doesn't make any sense to me.

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Gal:  Yeah, that's… that's wild.

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Rey:  That's totally wild. And something like this was very common to happen there. And this situation also took quite a dark turn. I actually ended up hurting myself because I didn't get any help. And then like half an hour after that, I actually got a proper long talk with the doctor and also started to have appointments with this mystery psychologist multiple times a week. And that was actually helpful. And I started to get better. But I'm really sad that it had to get this far, that I actually did something to myself before the doctors would actually do their job.

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Gal:  That is outrageous! And you also got misgendered a lot, right?

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Rey:  Yes. So as a nonbinary person, that's always a stressful thing. A lot of the staff in the hospital didn't really understand what nonbinary is. Many of the patients also not. And I didn't always have the energy to correct them. So I just kind of had to let it happen some of the time. At least the psychologist was understanding. But not everybody was like that. I have a really bad case of misgendering from a day hospital. I went to this day hospitals a lot. Also between my ward stays. And so in this one day hospital, I waited a couple of weeks before I came out because I just kind of wanted to see how the people are. But then I had the courage to come out to my therapist there, and she asked me why I didn't tell her sooner. And I said that I was worried that she might think that my gender is just another mental disorder or something. And she said: Well, it is though

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Gal: What?

Rey: I'm still speechless. Like she literally said to me that my gender is a mental disorder. That was horrible. And she also kept calling me Miss Rissanen, even though I specifically requested her to just call me by my name. Because she said that would be impolite.

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Gal:  Like so it's polite to misgender you and address you in a way that you expressly asked not to, and it's impolite to do what you actually asked to…

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Rey:  Yeah. In her logic, it was like that and she would not change that. And she even wrote in my hospital report that I got afterwards, something like: This person has a disturbance in their gender identity, but there is no reason to suspect a gender disorder because these symptoms fall under the BPD diagnosis.

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Gal:  What? So like your gender depends on your BPD. That's wild.

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Rey:  Yeah. In her opinion, it was like that. But this person was also generally obsessed with my BPD diagnosis. She thought everything I did was a symptom of my supposed borderline. For example, winter swimming, which is a hobby that I have had since I was literally five years old, and I told her that I had gone to swim in the lake. It was the early spring and she said that it’s a reckless borderline behavior. And she was like that about everything I did.

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Gal:  Like, she didn't know you were from Scandinavia? This is ridiculous. I mean, it's like kind of a normal thing over there, isn't it?

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Rey:  Yeah. And I told her it's even kind of normal in Berlin, but she wouldn't believe me.

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Gal:  Wow. This is wild. This illustrates neurotypical rigid thinking, right?

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Rey:  Yes. And we are supposed to be the rigid ones generally. These were just horrible times that I was going through because I was diagnosed with depression and borderline, but everybody was missing what was really behind everything that I was going through, which was my undiagnosed autism.

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Gal:  So first they diagnosed you with depression while you were actually having autistic burnout. What was that like?

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Rey:  It made me feel so hopeless, because the depression treatment, it just made everything worse for me. I think that's because depression and autistic burnout can look very similar to the outside, but what helps with them is very different. The standard treatment for depression is kind of trying to stay active and still do things, because not doing anything will make it worse. And I was trying to stay active. I was trying to do things. I kept getting more burnt out and I couldn't understand what I was doing wrong. Like I was doing everything I was told and it was getting worse. I really thought there was something seriously wrong with me. I thought it was all my fault. I thought my whole existence was a mistake and I felt really alone. I felt like I was alone in the whole universe.

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Gal:  Wow…

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Rey:  And also, I wanted to talk a little more about my borderline diagnosis because that made things even more complicated for me. So I was diagnosed the second time I went to the hospital a few months after my first admission. And my therapist at the clinic said that she thinks I have something more than depression, which I sure did, but this still went to the wrong direction. And she diagnosed me with borderline because that was what she was familiar with. And I think that's a very common thing to happen to undiagnosed autistic people.

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Gal:  Yeah. Especially people with ovaries. Right?

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Rey:  Yeah, it really seems so. Um, I had really mixed feelings about this diagnosis because I was in a way relieved for a moment because many of my random seeming struggles were now put under one diagnosis And for the first time, I felt like I'm not the only person going through something like this. But also, I didn't really understand why I would have borderline. Like that didn't explain anything to me. It's usually a result of severe childhood trauma, and I really just didn't think I have something like that. Like, sure, I have some amount of trauma, but nothing so severe that it would cause me a personality disorder, I didn't think so. Also, I was missing many of the most known symptoms of borderline like unstable relationships. I had some difficulties with social rules and such, but my relationships that I had were actually really stable. So this diagnosis just actually gave me more questions than answers. But I decided to trust the professionals anyway. I thought they knew what they're talking about, but now I know that they were just looking at my autistic traits from this perspective that was familiar to them, which was borderline personality disorder. Despite all of this, I was kind of hopeful. I was told about dialectical behavioral therapy, which is the most common treatment for borderline, and it's supposed to be very effective. So I thought, I actually have a chance to get better. It took me quite some time to get started with the therapy, because I was still too depressed to have energy for that, and my German language skills were not good enough for this kind of program yet. But at least I had this idea that there will be a treatment in the future that is going to save me.

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Gal:  Around this time, you also started realizing you're autistic, and I want us to get into your autistic discovery journey. But first, let's take a little break.

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We're back from break and we're going to hear from Rey what happened when they realized they might be autistic. 

Rey, I nagged you for two years with suggestions you might be autistic, but at first you weren't so much into it.

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Rey:  Yeah, I didn't really take it seriously at first, because I only knew these autism stereotypes that didn't really fit me, and I was being told over and over again that I have BPD, so I just believed that to be the cause of my issues.

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Gal:  So how did you end up thinking you might be autistic after all?

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Rey:  It happened kind of slowly at first. Even though I didn't believe it, I was still curious about why other people might think I'm autistic, and I did a little bit of research, and I was shocked to find out that I related to it a lot. But at that point, I still just pushed this topic aside because I had this feeling that if I get into this, it might change my whole world, and it was too overwhelming. So I didn't want to think about it yet. But at the end of 2021, I broke up with my partner of eight years and that was a big life change for me. It was really scary and I knew it needed to happen for a long time, but it took me long to have the courage to do that. And when it finally happened, it was actually such a huge relief for me. And I had this experience that a big life change can go well and I can do it. So then I started to think, okay, maybe this is a good time to start researching autism as well. I can handle it now because I kind of knew what's coming. And yeah, then I really went full into the research and quite soon became sure of the fact that I'm autistic.

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Gal:  And did realizing you’re autistic change how you thought about your mental health issues?

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Rey:  It really did. I was still struggling with my mental health, but I stopped blaming myself for everything. And I started being kinder to myself, which was huge for me. Earlier, I had thought everything must be my fault and I just suck at being a person. And now I actually knew that there was never anything wrong with me. But still, at this point I thought that I have both autism and BPD. I had got so used to the idea and I still wanted to go to DBT, the borderline therapy, because I planned it for so long and I didn't want to change my plans, and I still hoped it would help me with some things.

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Gal:  This sounds a bit like autistic inertia. How was it at DBT?

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Rey:  It was really not what I expected. I thought that the treatment team would be understanding of autism because of some similarities between autism and borderline, but it ended up being the exact opposite of that. They had very set rules for this BPD treatment, and some of them didn't really work for me as an autistic person. But when I tried to tell them that, they didn't really believe me. I think this is a familiar situation for many late diagnosed people, like: you have found out that you're autistic, but now the mental health professionals will not believe you. Some people in the clinic didn't believe I could be autistic because of things like not having a proper special interest.

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Gal:  How dare you?

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Rey:  Which I find strange, considering my special interest in arts and crafts and like, that I do this often for like twelve hours with no breaks, I forget to eat, I forget to go to the bathroom. I've done this my whole life, but I guess it wasn't trains or something acceptable, so it doesn't count in their opinion. They also thought that I get along with people too well, so I can't be autistic. And there was another psychologist at a different clinic. But she said to me that I am probably not autistic because I have a developed theory of mind, so I have even heard that.

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Gal:  Oh, seriously.

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Rey:  But back to the DBT. Some of the treatment teams said that they don't know enough about this topic, which I find a better answer to just admit you don't know. But still. Also these people, they didn't really believed my experience when I told them about this and asked for accommodations, and they still thought that they knew better than me.

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Gal:  Um, what kind of accommodations were you asking for and what was the response?

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Rey:  Uh, I wanted to wear my sunglasses and headphones in the group therapies. And the situation was that this therapy was a twelve week inpatient program. So it was in a hospital again, and it was really intense. I had to be around people all the time. I had a shared room with one person, and I was constantly so overwhelmed. And that made my sensory issues also even worse than usual. And I really needed to wear my sunglasses and headphones to be able to be present in the group therapy. But the treatment team didn't accept that, because they said this is avoidance behavior. And I tried to explain it, and the difference between, you know, avoiding feelings and having actual sensory overload and being like in literal pain. But they didn't get it. They were also concerned about me not looking like I'm present and everybody else also wanting to wear headphones suddenly.

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Gal:  And so what? I mean, like, it would be so awesome if you were like a group there, all sitting with your hats and headphones and being able to actually connect with each other because you're not in pain from the lights and the sound.

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Rey:  Yeah, I thought so too. Like, well, first of all, if somebody doesn't need these accommodations, I don't think they would want them. And if they need them, why would it be so bad if everybody had the accommodations they needed? In these people's opinion, it would have been bad. But it got a little better when I wrote the treatment team a four-page detailed letter explaining everything, how I experienced it, what these accommodations do for me, and that I actually can be present with them, even if it looks the opposite. And I explained to them about equality versus equity, like how everybody having the same set of rules doesn't mean that it's fair for everyone. Like accommodations can help everybody to be at the same level, have the same possibilities.

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Gal:  That's a really good point. The same rules will be beneficial to some people and detrimental to other people. And this is why equity is so important. Sorry. I just wanted to emphasize this.

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Rey:  Yeah, I think it's really important. And maybe this was also what made the team actually accept my need for accommodations a little better. I used as an example some people with physical disabilities that were also at the ward that had their accommodations that they needed for getting around or hearing or something. And I said, how is this different if I am autistic and I need these accommodations? And I think maybe that comparison made them realize that it's a similar situation. But still actually after this, I was allowed to wear my sunglasses, but they didn't want me to wear my headphones. They only allowed me to wear earplugs that were transparent.

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Gal:  Keeping up appearances.

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Rey:  Yeah. So they would not be visible to the other people and I would still look present, which was still upsetting to me because the earplugs don't work as well for me as the headphones, but that's what I went with. I had to settle for that. 

This inpatient setting was making me really burnt out anyway, I was having frequent meltdowns there. My sensory issues were really bad. Like my clothes were hurting my skin. I really would have wanted to sleep at home sometimes on the weekends, to have at least a little break from all the people, but they didn't allow that. Everybody got one night at home during this whole stay and somehow they couldn't make exceptions. And honestly, I wish I had left the treatment early, like I wasn't forced to be there, but I was so fixated on finishing this thing that I have planned, that I stayed until the end and came out in a much worse condition that I went in there. I was really at my breaking point.

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Gal:  Yeah.. that's terrible. I guess it's also a bit of an autistic inertia situation when you're in a place that you should leave, but you just can't.

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Rey:  Yeah, it really felt like that. I, I was fighting with these thoughts all the time: I want to go home, I don't think this is helping me, but still I don't want to stop, this is what I'm doing now. So that's what I did. There were also some more problems for me in addition to these. For example, we had social competence training, which was basically masking training, I would say. They taught us like how to have a good open body position when you talk to somebody. Like teaching a very certain kind of body language that will make you seem easily approachable and friendly. And they said it's good to look the other person in the eye and all that stuff, which upset me because I was just learning unmasking, and I had just accepted that I didn't have to conform to this neurotypical standard of body language and everything. And I was really wondering at this point as to why do they again care so much about how we look to the outside, than how we actually feel and what's actually going on with us.

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Gal:  Yeah, that's… that's actually really messed up. It's kind of like ABA related, I guess.

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Rey:  Yeah, it almost felt like that. I don't know if it was helpful for the other people, but it was not helpful for me. I just ignored, of course, all of this and I didn't start doing that. But I, I don't know, I don't like it that that's what they were teaching everybody.

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Gal:  Also, I guess if they were framing it as kind of a tactic or tool that you can use in certain situations when you really need to, but not like make it sound as if this is the way you should behave now with other people.

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Rey:  I guess there was some useful things like if we practiced a certain situation, but this kind of general advice for every conversation, I just didn't think it was good.

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Gal:  No, that's… no.

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Rey:  There's one more big struggle I wanted to talk about in this therapy program. And that was Eating Group, that I had to go to. And there were many people with eating disorders. I also have an eating disorder that I developed after my breakup, but it was a lot better at this point. It was not very active. But anyway, everybody with an eating disorder diagnosis had to eat all the meals together in a separate room, and there were kind of strict rules for this group, for how we were supposed to behave and what we were allowed to say. We were not allowed to talk about the food or show our feelings about the food or anything like that. And we had to eat a certain percentage of our meal. Um, I found this setting to be very stressful and it actually just made everything worse for me. I was having other eating issues like being nauseous from the stress. I have sensory issues with some food textures. So what would have actually been helpful for me would have been that I could have eaten alone in peace and have my safe food if needed. But instead, I had to go to this eating group and I just couldn't hide my disgust of some textures and my stress of being there. I often cried and I just couldn't hold it back, and that was just causing problems to the whole group. At some point, I was actually allowed to bring my safe food with me on the days when I knew I couldn't eat this food that we were given, and that made it a little bit easier for me. But that caused problems with the other people because they were confused as to why one person can eat something different and they found it unfair. And eventually I was actually let go of this group because my participation was causing problems for me and everybody else in the group. Um, but still, this took almost until the end of my stay there. So I had this one more big stressor on top of everything else to make sure that I was feeling even worse than I already was. 

So I've complained a lot about the therapy now. It was not all bad. I learned a few helpful things, but I would never do this again. And as I said, I regret staying until the end. I just left it so burnt out and it took me long to recover from this treatment that I used to believe would save me.

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Gal:  Yeah, that's just another disappointment, right? To like this whole process. 

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Rey:  Yeah, yeah, I had such big expectations for this. So it was really not what I thought it would be.

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Gal:  Yeah. Did you leave that experience still thinking that you had borderline? What were your thoughts about that?

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Rey:  Actually, the biggest thing I learned from DBT was that I don't have borderline. I just didn't believe it after all of this anymore. This being in this clinic made me notice all the differences between BPD and autism, much more than the similarities. And I realized that all these behaviors that I had, looked like BPD to people on the outside, but the reasons behind them were very different. That also explains my diagnosis. I think the doctors just saw in me what they knew already, which was BPD and not autism. In my case, for example, I had mood swings, so to say. This was one of the diagnostic criteria. And for people with BPD, this is often triggered by things like some relationship issues. For me as an autistic person, it's just that I am easily overwhelmed. I have sensory overload and maybe a lack of recovery time after socializing, and that just causes me real intense feelings and to have meltdowns.

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Gal:  Yeah, that sounds very relatable, right? Of course, I mean, you have meltdowns, you have burnouts, and then you're like, why are you sometimes depressed, and sometimes you're shouting at people or crying.

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Rey:  Yeah. Another thing that had a different reason behind it for me was a shifting sense of identity. That is a borderline diagnostic criteria. But for me, I think this was actually just that I was masking a lot before and kind of mirroring the people around me and didn't really know who I was as a person. But this has changed a lot since I have been learning unmasking. I know myself a lot better now and my identity is quite stable. And, and there were things like dissociation. A lot of the people with borderline had these episodes as a trauma response. They had some flashbacks and they went into dissociation. And for me, it's just that my body and mind shut down from being overwhelmed and overstimulated. And then there were, of course, all these criteria that didn't fit me in the first place, like the unstable relationships and most types of impulsive behavior. So all in all, being in DBT and being around all these people with borderline taught me that I was dealing with something different. And I mean, no hate to people with BPD. I hate that it has such a stigma. And I believe you can also have both autism and BPD. But in my case, I believe it was a misdiagnosis. And I've talked about this with my doctor and my therapist and they both agree.

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Gal:  Thank you for explaining about these differences. I think it's very relevant for a lot of our listeners. I also wanted to ask if there were any good experiences or lessons you took away from all these mental hospital experiences?

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Rey:  There were a few. Um, I would say most importantly, I learned to advocate for myself. It's of course sad that I had to fight so much for my rights when I was already in hospital, but it really taught me to stand up for myself and ask for the accommodations I needed. What helped me with this the best was writing. Like writing this letter in the clinic, for example, or writing notes in advance before I met a doctor to show them what I need help with. Because often in the situation when it happens, I get overwhelmed and I can't speak properly or at all. So writing has been really a good tool to communicate in these situations. I can recommend this to everybody who is dealing with something like this. 

I learned a few positive lessons from DBT as well. I would say I have learned to recognize my emotions better, which makes them easier for me to deal with. I used to be really afraid of my intense feelings because I didn't understand them. It just felt like I was dying. I was self-harming to try to get out of this horrible feeling. But in the therapy, we were analyzing our feelings a lot, and I started to learn patterns and understand in what kind of situations I usually started to feel a certain way, and it made me feel less out of control. 

And there was a skill called emotion surfing that I learned, which was actually really helpful for me. I imagined this very literally. I actually imagine myself surfing on a wave when I'm going through some intense emotion, and it's weirdly helpful. This clinic was also a safe place for me to practice this and just try out what happens if I don't fight my intense feelings and just let them come. And if something bad happened, I would have had help. And then I found out that it actually always passes. Sometimes I might have a meltdown, but then it's a meltdown that I needed to have. Just knowing that emotions don't usually last for very long at once, and they come and go like a wave. It's also about just kind of trying to accept them and feel them as they are. 

Something kind of related to that is also radical acceptance. This is one of the core principles of DBT. I'm not sure I can explain it very well. You can look it up if you're interested, but learning this acceptance has actually also been helpful to me after this clinic stay in my autism journey. This helped me to accept some struggles that I have as an autistic person. Like I like my autism. I would not change it if I could, I would be a totally different person. But of course there are still hard things that I have to go through, and there will always be some things that I will struggle with. I will always need some accommodations and a lot more rest than most people, and my brain will always be processing a lot. So this is not something that's going to be changing. So it's been helpful for me to learn to accept that. 

I already mentioned this, but I met some nice people in the hospitals, and I still have some friendships that started there that I still have to this day. I'm really grateful for still having these people in my life. And I also met my current therapist at the clinic. We got along really well there. The beginning was a little bit rough because she also didn't understand autism very well, but she was willing to learn and she started doing research about it so she could be more supportive and understanding. And she was only working there temporarily and then went to work in an outpatient clinic and suggested that we could do therapy after I get out of there. So we did. And I still have this therapist to this day. They're still helping me a lot and being really nice and supportive to me.

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Gal:  Wow. This is actually really amazing, to have a good therapist. As you probably understood from my stories before, I was completely unsuccessful at finding one. So I'm really happy that you could actually find a good one eventually.

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Rey:  Yeah, I think it's actually quite rare to find a therapist that you actually can work with. I also have had so many therapists earlier in my life that I didn't talk about now, that were just not helpful, like not necessarily bad at their job, but just not a good fit. So I'm really grateful for once having found this person that can actually help me.

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Gal:  I'm kind of waiting for the next generation of autistic therapists to like graduate. Uh, like I'm giving them ten years and then I look for therapy again.

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Rey:  I guess I will also. I would love to have an autistic therapist, um, that would be awesome.

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Gal:  So just to wrap up, could you update us on your current situation?

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Rey:  I'm happy to say that I'm doing so much better now. I'm actually excited about many things in life and most importantly, I don't hate myself anymore. And understanding my autism and what it means to me has made me look at life from a whole new perspective. And I'm so grateful that I dared to start researching this and learning about it, because it really saved my life. And I was also diagnosed a year ago, which was the biggest relief ever in my life. I can't say in words how relieved I am. Now I don't have to try to explain myself. Or maybe explain, but at least I am believed more now when I say I'm autistic.

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Gal:  Yeah, I mean this is crucial. I knew I was autistic ten years before I got diagnosed. But now when people are like: No, you're not autistic, I'm like: I got diagnosed. 

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Rey: Yeah. Exactly. Yeah, I thought… so you know how it feels. Yeah. The assessment itself was quite hard for me because it's still made from this deficit-based point of view. They're asking about difficulties and abnormalities and yeah, deficits, all the negative stuff. And I had to talk about myself that way to fit my experience to these questions that were formed in a very negative way.

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Gal:  And just as you were accepting yourself, yeah.

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Rey:  It temporarily made me feel bad about myself again. For a while, I felt like I actually do suck at being a person and I'm just bad at everything and I can't do anything because that's kind of how I had to talk about myself. But luckily that has got better since I have spent a lot of time with my lovely autistic friends and just, you know, lived and seen the real autism experience and be reminded that, yeah, it's really far from how these questions were formed.

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Gal:  Yeah. I mean, because clearly these questions were about how we look like to other people who are probably allistic and not how it feels to us to be us.

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Rey:  Yeah. I think it's also so much about how much we bother other people around us, how much of an inconvenience we are to the neurotypicals. I hope this is changing in the future, that the diagnostic criteria will be formed differently. I believe it will, but at this point it was still very negative.

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Gal:  Yeah.

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Rey:  But right now I'm in a situation where I already know myself a lot better and I enjoy things. I can imagine wonderful things for my future, but I'm still recovering from my autistic burnout. It hasn't gone away. I'm still struggling with my mental health, and I know I still have a long way to go to be able to live my best life. But it makes me feel a lot better that at least I will never be in this situation again, where I don't know what I'm dealing with and feel hopeless because of that. At least I know now why things are hard for me and I have a really good support system. I have lovely friends, my family, my therapist, as I said, and also I have a doctor who is informed about autism and neurodiversity in general. Yeah, I would say my biggest goal in life is just to find a sustainable way of living for me to have a more stable mental health and ultimately just be able to live a good, authentically autistic life. And I really believe I will.

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Gal:  This is really great to hear. Thank you so much for joining me here today. It was a really wonderful and important conversation that I'm sure will be relevant for a lot of our listeners.

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Rey:  Thank you so much for inviting me. It was really nice to share my experience. I hope this can make maybe somebody listening feel a little bit less alone with some of these things.

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Gal:  I'm sure it will. Thank you so much.

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Thank you for being here and listening to our episode about mental health. I'm Dr. Gal Schkolnik, pronouns: They/Them. And I'm going to take a minute of your time to remind you about prepped.to, a website where you can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is totally free without any membership fees or premium tiers. The web address is prepped.to . prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. Another way you can help keep the lights on at prepped.to is by donating as little as one euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to - Know before you get there!

Today I was joined by Rey Rissanen, pronouns: They/Them, an artist that creates beautiful crochet designs including crochet stim toys and houseplants, which you can see on their Instagram @rainbowrey.crafts and in their bio there's also a link to their other artwork. I'll post the links in the show notes.

This episode was produced and edited by yours truly. Theme music by Lir Lutau Shahar. Lir is a composer and sound designer who loves to make whimsical and magical music. Listen to more of seas stuff at @lir_lurim on YouTube or SoundCloud. For collaborations, see contact in the show notes.

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‍Gal: Welcome to The Autistic Rant Hour, the podcast where we rant and infodump about the aggravating, the inexplicable, the unjust and infuriating in all fields of life, one episode at a time. The Autistic Rant Hour is part of the Autistic Culture Podcast Network. 

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Have you ever gone to the doctor with some symptoms and had them not find anything wrong with you? Or maybe you got sent home with an order to reduce your stress levels and have some tea. We've all run into medical staff who don't know we were autistic or what that even meant. Who never suspected EDS, POTS, ME, endometriosis or autoimmune conditions. We went to them with dizziness, nausea, belly aches, GI symptoms, headaches, migraines, joint pain, whole body pain, recurring colds, you name it. They either dismissed us right off or ran a battery of tests on us. But in the end, the conclusion was the same: Go home, try to relax and have some tea. There doesn't seem to be anything medically wrong with you. I'm Dr. Gal Schkolnik, pronouns: They/Them, and today I'll be joined by Simo_tier (pronouns: it/they) so we can rant with each other about some of these frustrating stories that literally take years off our lives. Simo_tier is a multimedia artist and activist, influenced by its lived reality as a disabled, indigenous, agender, white, gay, AuDHD femme, deeply passionate about lifting up and supporting QTIBIPoC voices and projects, as well as breaking down barriers to create a community based on disability, justice and reformative change. It's also the founder of a queer autistic meetup in Berlin I also help organize and that was where we met. Great to have you here, Simo.

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Simo_tier: Yeah, thanks for having me. Thanks for the nice introduction.

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Gal: I'm going to start with some stories of stuff that happened over and over in my life, where I went to the doctor with some symptoms, but could not get any help. So the first story was already in high school. I was in the eleventh grade. That was the first grade in school in general, where I actually had to make an effort. Up until that point, academically, everything was going super easy for me, and suddenly we were learning some hard stuff, and it was really jarring for me that I had to work so much and still kind of felt like I was being left behind academically. I was also being left behind socially because the friends that kind of came to high school with me from the ninth grade and the tenth grade, all kind of seemed to run off on their own and form their own friendships. So this was a really, really difficult year for me. On top of it all, I suddenly had inexplicable bouts of nausea and dizziness, and I went to the doctor, who was pretty concerned about that and gave me a whole bunch of tests, at the end of which he was like: Look, there's nothing wrong with you, I'm sorry, I can't help you. And so I went home, a really confused, nauseous and dizzy teenager, having it a rough time at the time. And I think I was watching TV or something and one of the characters said something like: Wow, hearing about that made me sick to my stomach. And I thought: Wait, can you feel nausea and dizziness just because something is disturbing to you mentally? I can think of a lot of stuff that happened in this last year that have been super disturbing to me, and maybe that's the reason. And I kind of followed the pattern and that was it. I was responding to distress with nausea and dizziness, something that the doctor never even thought to come up with.

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Then there was university. In university, studying was difficult, though possible. And I don't know if you've ever had this kind of exam period where you're just frantically studying for weeks, trying to pass your exams. At that time, I lived in a place where my study was on a balcony, open to the elements. It wasn't as cold as it is in Berlin in winter, but it was cold enough. I was basically huddled over my books and my notebooks (back in the day, we weren't using computers for studying) next to a not very comfortable desk on a balcony, for weeks on end, super stressed. At some point I started getting belly aches. I didn't know what was the cause, so I went to a doctor. The doctor again ran a bunch of tests on me. Nothing came out and then he just told me: Don't take it the wrong way, but I think it's all in your head. And I was like: I don't know what right way there is to take this, so byeee! I told my mom about that, and she talked to all her friends about that, and one of them suggested a good doctor. So I went to that doctor. He felt my belly and he was like: You know what I think? I think you have a muscle inflammation in your abdominal muscles. I was like: Wow, okay, what do we do? He gave me some anti-inflammatories, which, by the way, later turned out to be fatal. I'm glad I survived. Um, and that actually really helped. And I guess I was just cramped from hunching over these books in the cold for weeks on end. So that was actually a good experience with the second doctor.

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And then there's the stuff that's just been plaguing me my entire life: Light sensitivity and what it does to my sinuses and the resulting headaches. It seems that whenever I reach a certain quota of photons getting into my eyes, my sinuses start flaring up, and then they kind of press down on my eyes and my head, and I just start getting terrible headaches. I went to so many doctors about it and they could never find anything wrong. I guess they didn't know and I didn't know I was just autistic, and I have a very strong light sensitivity. I also have that thing that I only recently heard about, which is that visual snow syndrome. So I guess that might be related to it. Essentially, my visual system is just overactive and very sensitive, and this causes these headaches and sinus aches. But because no one knew, including myself, that I was autistic, and even if they did, they didn't even know what it means to be autistic and how it can give you this kind of symptoms, I never got any serious answer to these questions. And then like, you know, there's the question of what happens when you actually do tell them you're autistic. Simo, I think you might have some thoughts about that.

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Simo_tier: Yes. First of all, thanks for your story. It's like it really resonates. It's this, um, that it sometimes it’s just also luck. What kind of doctor you get in front of and if they can help you, and if they are really listening or take you seriously. And then, um, we get into the medical care and we talk with doctors and they have a lot of biases. So it's already, uh, like the odds are stacked against us if we're, for instance, migrants already, or we're queer or trans. And then if we have several other diagnoses, and then if we also tell our medical providers that we're autistic, these biases can like stack up on each other. And, um, the danger of getting discriminated against in the medical system from the doctors just rises. Especially with being neurodivergent, we often have difficulty advocating for ourselves. And then when there are these stacked biases, it's even harder, as you describe that often maybe we can't really explain the sensations that are in our body, or we don't explain them in quotes “correctly” in the eyes of a doctor. And then it's just easier for them to say: Maybe it's in your head. And that's like the answer. Because even if it's a mental thing, mental stressors do manifest in the body. So it still should be treated. So that's really interesting also to bring up.

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Gal: Yeah. And I guess like when you say you're autistic, for example, some, some doctors just kind of go like: Hmm! I guess they don’t know about it, they don't care about it, they do know about it? I don't know exactly what this kind of “Hmm!” kind of means, but I did have that. And then there are the ones who will then just kind of: Okay, this person is mentally disabled, so I should either explain everything super well to them, which like, okay, I can live with that; or: They are mentally disabled, so I should just pay no attention to anything they're saying because nothing they're saying is valid, which is the fear, of course.

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Simo_tier: Absolutely.

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Gal: And I guess this can get even worse when you don't even intend to disclose this information. Like if you come and you have reached an informed decision to disclose that you're autistic because you think it's super pertinent to your case, or maybe you trust this particular practitioner. It's one thing, but nowadays with the computerized patient files and so on, if one of them knows about it, maybe they'll write it in your file and maybe someone else will also find about it, right? Is that like a concern, do you think?

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Simo_tier: Absolutely. Like, um, I don't know if many people know this about the German medical system: They are now in the process of trying to digitalize everything. And a year ago started this project of trying the electronic patient files. And that, in a way can be a great problem just in the way you describe it, that if we have an electronic patient file, then every provider that you go to that reads your insurance card can actually see all your diagnoses, and that can get very, very dangerous. Looking at different groups, like not, not even just us, autistic, ADHD, neurodivergent, or people with, for example, other stigmatized diagnoses, like HIV, for instance, or I myself have ME, or sometimes called MECFS, and that is also more… it used to be a diagnosis that many people or many providers didn't really believe in was an actual disability. And then we can get treated very differently. Or for instance, me, I'm, I'm a medically transitioned person or a trans person. And what if that is in digital files and then people see it and then treat me differently? This is like a real danger for us, and it's just another way of disclosing things that should be more private and puts us at immense risk. And if we talk about the medical system, it puts us at risk of not being treated the same as neurotypical patients or even being withheld treatment.

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Gal: Yeah, absolutely. And it's like a whole juggling act with disclosing or not, because sometimes the symptoms are related. You have to wonder, like if I say, okay, should I say I'm autistic? So that they also realize that I might have EDS or some kind of hypermobility, or should I not? Because in the end, I want the doctor to believe my symptoms and not like, just send me off saying it's all in my head. What experience have you had with doctors taking you for your word?

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Simo_tier: Mhm. Yeah, that is absolutely a problem because also, um, many of us autistic people have difficulties ourselves even noticing what's going on in our bodies and seeing, okay, is this just being overstimulated or is this actual pain? Determining what's actually happening. And we, of course, should all have access to holistic medical care. And it should, in a perfect world of… medical practitioners would be able to hear this information and be able to treat us accordingly. But yeah, I've had many, many experiences with this kind of disclosing some aspect and then being treated differently or denied care, even as recently as just about half a year ago. I have a pain practitioner I've been going to for a long time. I'm very happy with them and they are a really, really good doctor. And I told them because I also tend to forget a lot of things. So it was like, like I had forgotten to tell them that I'm autistic. And also I didn't think of… that would be important, but somehow it came up and then they said, ah, that's interesting. They had gone to some extra schooling to how autistic people feel pain differently. And we talked about that a little bit. That was interesting. And then they said:Yeah, do you think maybe your chronic pain is more because you're autistic or do you still think you have ME?

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Gal: Hmmm.

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Simo_tier: And that was like really weird for me because I, I have like this doctor I've been going to for a long time. We have a good trust relationship with me. I'm not going to get into it too much, but there isn't really… there aren't really practitioners who treat ME or who are very knowledgeable about it. So it's like a rare thing to have a doctor who has a little bit of knowledge about it. So I'm still going to keep going to this doctor. But still, it was a little bit weird. I was like: Okay, why is my immediate diagnosis now being questioned just because I'm autistic? Like back when I got the diagnosis, I was also autistic. And I do know that like, for me, it's not a question that was.. just maybe it was the wording, but it still felt a little bit strange.

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Gal: But I mean, also getting the diagnosis to begin with, that sounds pretty torturous, right? Because how do they even diagnose that?

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Simo_tier: Yeah, it's, it's very difficult. I don't know how it is today because of course, the whole conversation about ME has changed a lot after the pandemic because it is an immuno-neurological disease that is mostly triggered from a virus infection. And many people who got Covid and then they didn't get better, and first they got the diagnosis of long Covid, and then some people then later got a diagnosis of ME, so there's like beginning to be more awareness and research into it. But I got ME much earlier, over twenty years ago and diagnosis much later. But, but the diagnosis process is: there really isn't one. It's an exclusionary diagnosis process that basically they do all, all the tests and try to see if it could be something else. And then basically we guess it might be this. And then there's also some tests but you can't, I don't know if it has changed, if there are some tests, but back when I got my diagnosis, there wasn't really anything. And it was more exclusionary thinking of trying to go through the symptoms and seeing if any other diagnosis would fit. So it can be a long time. And also there aren't many places who diagnose. So it is mostly a very, very long journey to get there. And then you get the diagnosis. But then there isn't… The next step is like: you're being basically left with it. There isn't like a treatment. So it's like you have to sort of manage the whole situation yourself, which is also very challenging.

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Gal: Wow, that sounds super difficult.

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Simo_tier: It is. Um, luckily I've been around the block a couple of times, as they say, like I've gone through this whole process. I've had this diagnosis for about twelve years and I've had ME for even longer. So.. and I am active in the disability justice movement. So I, I have quite a strong, anyway, a strong sense of justice, but also a strong sense of advocating for myself, which I've had to learn through this process. So now I have these doctors, I have this specific doctor I mentioned, and maybe I wasn't able to say perfectly that what they said was not okay, but I was able to say: No, no. Of course, I experienced bodily things differently as an autistic person, but there is no question for me that I do have ME. And then that was okay in that moment, like they didn't continue questioning. They were like, fine with what I said. So yeah.

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Gal: Okay. Yeah. Okay. That's something at least, I guess.

If you want to read about Simo_tier’s activism (in German), check out its website https://vamky.de/ where you can also find a podcast (also in German) about disabilities and exclusion, by society and inside the community. If you want to keep up to date with events it organizes, check out Instagram @simo_tier. You can also find these links in the show notes. 

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And on top of that, there is problems with interoception, alexithymia, questioning yourself. What would you say about these things? How do they affect your interaction with medical professionals?

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Simo_tier: Yeah, I think communication is also like a very difficult thing anyway for us. And then to be having to be like perfect in this tiny window that you're given when you visit a doctor, because they normally don't have a lot of time. And then having to like, explain everything in a way that they understand and that we're doing it “correctly” in quotes for this situation, is like super difficult. Because maybe if I'm not even sure, is this really a joint pain issue or a GI issue? Or how can I then advocate for myself that the doctor is like: Yes, I believe you. It's usually like I tend to already, in this kind of situation, not be able to always say my sentences perfectly. And then there's the extra stress on top of that. And then the whole medical system, how they look at these things, or often, or I feel they are often not very well structured, or I don't really understand them. And this is what I hear from other autistics also. Like things, for instance, when talking about pain or chronic pain, they're, in hospitals and doctors, they like to have this pain scale that they say from one to ten. Like, how bad is your pain?

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Gal: Oh my God.

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Simo_tier: And instantly my head goes like, oh, what, what, what's the, uh, like in what context is it like, uh, today? Or yeah, if I think of one to ten, then I, of course, think of my whole life. What's like the worst pain I've ever had. And is this like, how can I put it on a scale? Or do I have to put it on a scale, how I think other people feel pain. And this is like actually there, there is research into this, that this pain scale is anyway, not really a good thing to use and that people understand it very differently and that it is a challenge for autistic people to understand. And often I also like, I always want to look at these kinds of things also with an intersectional lens, because when we talk about pain especially, we are often not being believed by doctors anyway. When we say we are in a lot of pain, and this especially pertains to black people, especially black women are often not believed when they have pain, or they are even believed not to be able to feel pain in the same way that white people are

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Gal: wow

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Simo_tier: which is horrendous. But this is, um, the like medical racism is a huge thing that is still happening. And that's a totally different topic. But I still, when we talk about this topic, I want to bring this up.

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Gal: Yeah. I think actually in, in Germany, I think they have like a specific Latin name for like the dramatic Mediterranean patient.

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Simo_tier: Okay. I don't know about that… uh I haven't heard it, but I, I wouldn't be surprised. Like, it's really interesting to look into the topic of just medical racism, medical misogyny and so on. And also, I think this is a thing when people who are determined of being like developmentally challenged or, um, mentally ill or neurodivergent or whatever you want to call it, like people who are being infantilized or not being granted humanity in the same way as maybe a white cis neurotypical person is, then I don't even think that a thing like a pain scale really makes any sense there. Because even if we say we are in… our pain is eight or nine or ten, um, because these things are against us anyway, then probably it's not being believed. Yeah. It's, uh, I just want to mention that also with people with chronic pain, we tend to determine our pain on this weird pain scale thing much lower than people who don't have chronic pain. Because when you live with chronic pain, you, in a way, get used to it on a horrible level. And then when someone asks: How severe is your pain? Maybe we say: My pain is only like one or two, even though it actually is much higher, just because that's what we live with every day. So maybe also there with people with chronic conditions, we don't get taken as serious as someone who maybe doesn't have chronic pain and then reacts much stronger when they are in pain, for instance.

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Gal: Yeah, absolutely. And then there's kind of like also the other side of the coin, which is not feeling the pain because you're autistic and like you feel some… some things are more painful maybe than people think they should be like an electric light. It's painful for me. It's like literal physical pain. But it happened to me twice that I was walking around with a broken bone for a month. So the first time I was in fifth grade and I, I don't know, I was running around in the courtyard or something, twisted my ankle and it really hurt. So my mom took me to the doctor. They did an X-ray and they were like, kind of: Yeah, I don't know, it seems like you twisted your foot. So like, just rest it a bit or something. And for like a month, it just kept hurting more and more all the time. So like, after a month, I went to the doctor again and he looked at the X-ray again, the same X-ray, same doctor. And suddenly it was like: Oh, it's actually broken. And he cast me, but it's like, I guess I wasn't crying. I was like: Hi, doctor, I'm in pain. You know, like I wasn't crying, I wasn't screaming.

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Simo_tier: Yeah. You weren't, um, reacting in the normal way that other kids would if they were in pain. So that's already like an indication.

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Gal: Exactly. Like you don't look like your bone is broken.

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Simo_tier: Exactly. Like I also had this as a kid that I have like hypermobility and I tended to, when I played with balls, I played basketball and I, um, constantly broke my fingers. And then it became this, ah, but I'm used to having this pain in my fingers and maybe it's broken. Now I have to wait a couple of days. And then I always checked. My fingers are hurting. Are they turning blue? Then maybe I should check if they are broken. But if they don't turn blue… like trying to find these, like outside. If it looks different, maybe then there's something wrong, but not trusting their own pain.

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Gal: Absolutely! I also used to break my… my toes all the time because I kept running into things. I guess that's dyspraxia, right? So like you keep running into stuff and then you're like breaking your toes and you're like: Is it broken? Is it blue? If it's blue, it's broken. Exactly like what you just said. I also dislocate my toes a lot. When I was a kid, it was all the time and I just… I didn't know what happened. I was like, kind of: Ou, my toe hurts. And then I would play with it a bit and it would stop hurting. And only when I was like, I don't know, thirty or something, I realized that when that happens, I like dislocate my toe and I just put it back in. I just didn't know that it’s like…

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Simo_tier:  Yeah. We get like used to the pain that: ahh, okay, I felt this before. Uh, this is not… like the sensation is weird, but maybe, maybe I'm already used to it. It's like pain manifests very differently in that way.

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Gal: Yeah. This thing with the broken bones, it's ridiculous. Then of course, it happened to me again later in life. I went bouldering and I got a bit overexcited. I ended up having to jump from four metres down and like my feet, my feet landed fine, but my, my palm lightly touched the floor or like the mat. And so whatever this bone is called pistoned back into my elbow and it really hurt in my elbow. So I went to the doctor. Actually, this time I didn't believe myself. It hurt, first I just went home with like some coolpacs and I was like, okay, it will get better. The coolpac is working. You know? And then like a week later, I was like: I don't know, I actually have to go to the doctor. I went to the doctor, I got an X-ray. He was like: Nah, I think you're fine. Just give it a rest. Here, take some time off work so you don't have to work with your hand, and I'll send you to an MRI in a month and a half. Okay, so it went on hurting. And then I also couldn't straighten my arm anymore, like the elbow wouldn't straighten out. And so I went to the MRI and like this super nasty technician there was like trying to make me straighten my arm for the MRI. And I was like: If I could straighten my arm, I wouldn't be here to begin with. And she was like: But we wouldn't be able to see anything in your MRI if you don't. And this is what happened. I couldn't straighten my arm, the MRI, you couldn't see anything. And then the doctor was like, okay, let's give you a CT. And I'm like: When? And he's like: Tomorrow. And I'm like: Why didn't we do that to begin with? Why did I have to wait for a month and a half? And of course, in the CT it turned out the bone had broken and had now mended wrong.

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Simo_tier: Yeah, exactly. This is, this is like what happens constantly. It’s this like not being, um, that they, they don't take things seriously when it happens or if we then maybe think, oh, maybe it's not so serious and we go in later, then we get like berated or the doctor gets angry, like uh: This is serious, why didn't you come in earlier? So it's like both things at the same time. Like there's no way to do it correctly. And then either way you do it, you get bad care or being treated badly. Then why didn't they do it immediately?

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Gal: Yeah. This is so frustrating. I think maybe we should take a little break now. 

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Okay, we're back from break. And most of the stories I told you were from a different country. And these things are very different in different countries. And I live in Germany. Where I grew up, whatever it is, whenever you go to the doctor, they're going to run a million tests on you to find out what's wrong with you. For me, this is the standard of treatment. Here in Germany, it's a totally different thing, even to get basic tests like blood tests and urine cultures and this kind of thing, you kind of have to convince them that you need that. They're not like: Oh, you've come to the doctor with some problem, let's just run some blood tests and urine tests. No, no, no, no. They seem to have some kind of a limited number of tests they can run. And then they have to kind of prioritize who they believe most, who they think is most important to find out what's wrong with them, which is beyond belief.
And this is what happened to me when I had a gastrointestinal mystery. So a couple of years ago, I got a food poisoning and I got treated with antibiotics. But I never got better. I mean, I got a little better. It was really spectacular while I was having the actual food poisoning, and I'll save you the details. But I never really got over it. I went on having a bunch of very unpleasant gastrointestinal symptoms. And so I went to my general practitioner and she did luckily run some tests on me and saw that I have elevated inflammation markers, but couldn't find any pathogen in my system. So she was like: Look, I don't know what's going on here. I'll give you a transfer to a gastro expert. I'm like, okay, thanks. And naȉvely, I went about trying to get an appointment to a GI expert. In vain. There was nothing. There weren't even appointments like in the far future. There was simply nothing. So I went back to my general practitioner and she was like: Okay, I'll give you an urgency code, which is something that you can get here in Germany if your doctor wants to urgently transfer you to an expert, because otherwise it can take months to get an appointment. So she gave me this urgency code. And then basically when you have an urgency code, you can call this kind of hotline and they just assign you to a random doctor. I don't know exactly how this system works.

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Simo_tier: Yeah, that's exactly how it works. 

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Gal: Yeah I know, I just don't know how they decide who to assign you to. Like, I'm not really sure.

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Simo_tier: Just someone who's available.

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Gal: But like, if they're available.

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Simo_tier: Sort of in your city. It's ridiculous.

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Gal: I know! It is ridiculous. Like, if they're available, why aren't they… why don't they have appointments? Anyway, so I got assigned to some rando and I went there and there was like this really sweet old gastro expert. He asked me a lot of questions, he seemed really caring, he did an ultrasound test and told me that my internal organs look fine, and so I should get a colonoscopy. And I was like, okay, great. I went to the front desk and asked for a colonoscopy appointment, and that was in three months. Okay. And this was already like two months after I initially got sick. So I'm like kind of already months into this gastrointestinal fiasco. Then I get into the colonoscopy and then as I'm about to leave, I get a diagnosis. They say I have a very severe inflammation, and they give me a bunch of medications and they just like, tell me how many times a day and for how long I should take them and send me home. Okay. I was clearly still high from the general anesthetics. So I was like, kind of: Okay, cool. And I went home. I took the medications. One of them was a systemic cortisone. No one warned me about the side effects. No one asked me if I am prone to glaucoma and osteoporosis, which you should check before you give someone this kind of thing, which I am because like, that's what my maternal line looks like. It was the worst month of my life. Because on one hand, actually it did help with the GI condition, but on the other, I had so much palpitations that I couldn't fall asleep at night hearing my heart bang away the whole night. It was a nightmare. And then I ran out of this medication. So I went back to the clinic and I was like: Hey, so I ran out of medication. What… What do we do now? Like, do I go on? Am I supposed to stop with these medications? It's been kind of horrific, to be honest. And they're like: Oh, we don't have an appointment for you. I'm like: What? And they're like: I don't know, go to your general practitioner. And I was like: What? So I went to my general practitioner and the general practitioner looked at like my diagnosis and was like, kind of: I don't know what to do. I'm not a gastro expert. I don’t know what to do. And I was like: I don't know what to do either. So in my despair, I actually contacted a gastro expert from my country of origin, and I paid hundreds of euros for an online consultation where she asked all the right questions and gave me all the relevant information that nobody gave me until that point, and told me about all the alternatives for treatment and what we should start with and how we should go on, and what kind of blood tests they should do and how often. And just gave me this all written down beautifully. And I mean, like, this is of course what money can buy, which I'm privileged that I could spend that money, but it shouldn't be this way. So then I went back to my general practitioner with all these instructions from the foreign expert that I also had to translate to German, of course, and told them, okay, this is what you should do. These are the tests you should run, these are the medications you should give me. And they did. And it worked. And that was, well, the first time that I felt like it's actually getting addressed. And then they also realized that it can't go on this way. Like we can't do this kind of correspondence medicine anymore. So they gave me another urgency code for a gastrointestinal consultation, which is different than the one that you get for the colonoscopy, which is also wild because like you get, you get an urgency code for a colonoscopy. You get the colonoscopy and then you can just go and figure it out on your own or something like they don't…

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Simo_tier: Exactly, exactly. It's really this, like, as I said, like we need holistic care. And this is like they're just treating the one thing and sending you on your way and there's never any follow up. So this… it can get really, really dangerous as in this… that's why this case, what you're telling me about it brings it all together.

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Gal: Exactly. And I mean, like, it's, I mean, what I have is a chronic disease. And the guy who did the colonoscopy told me that. And so if… if it's a chronic disease, then clearly I need long term treatment. I need to see a doctor every few months. You can’t just send me to the street with this medication and like, never to be seen again. But this is exactly what he did. And this is how the system works here, apparently. And then… so I did get the second urgency code. We're talking here already almost a year after the original food poisoning. And then I got the code and I got some random doctor. And miraculously, it's an actual good doctor. She's a competent gastro expert. Friendly, nice, explains everything to me, treats me with respect, gives me the treatment that actually works. And when something doesn't work, we find an alternative together. She runs all the tests, she recommends other tests and then looks at the results. She’s kind of like moonlighting as my general practitioner now, which is ridiculous, but like, I'm like: At last, a good doctor.

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Simo_tier: Oh, yeah, this is exactly it. I'm so glad you found this amazing doctor in the end. But the story is so demonstrative to show how deeply bad the system is that it's all by chance. You got to this really good doctor after this year long ordeal of pain and suffering, basically. And also, you got this medication from the first doctor that really was in a way, dangerous. I've also had experience with these cortisone because of GI tract issues. And when I took it, I didn't sleep for three weeks, which is really not ideal. And exactly this that you, you need to go to a general practitioner and they send you somewhere, you don't get an appointment because nobody has appointments. You have to get an urgency code. And most people don't even know that exists. So you're like lucky that your doctor is like: Oh, there is a thing like an emergency code. And then you do this like, nobody tells you these things. And then it's like a lottery where you just get some doctor that is available somewhere in your city. And all of this comes together like: the medical system, how broken it is, how everything is by chance. At least, like what I want to bring into this, because we're talking about the German system, at least you're able to have something that is called… you can choose your own doctor because in many countries you are assigned a doctor from… based on where you live, and you're not allowed to change them. And that can bring many, many difficulties.

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Gal: Oh my God, it sounds horrifying.

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Simo_tier: It's horrifying. Um, I'm not going to get into this now, and… but just that's, that's a problem. Like we are privileged and in a very, very rich country and still we have these problems and all these, all these things play together like class, that if you have money, like you were able to pay for a good doctor, all these things are embedded into the system and you have to sort of navigate it and work your way through it and advocate for yourself and so on. It's a problem if you get a food poisoning and it doesn't get better. That's dangerous! And then you had to go over this whole journey for over a year. And that is a very, unfortunately, typical experience for chronically ill people or people who then get something and then it develops into a chronical thing. It becomes this, that being disabled or being chronically ill is sometimes like a full time job.

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Gal: Oh my God, absolutely.

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Simo_tier: You have to manage like the appointments and advocate for yourself and then you have to wait. You have to like organize your calendar and do all this communication work constantly and be on top of everything because there isn't like a system that supports you. And if, if you don't have a good general practitioner, and it's become now a problem, at least here in Berlin, that it's even difficult to find a general practitioner, there aren't any appointments, so you can go with a problem. I, I right now have have a problem I've had for half a year and I'm looking to go to see a dermatologist and I still haven't found anybody. And my next step is also going to get this urgency code. But being as disabled as I am, I, I have to see each of my doctors every three months, and I have like four or five doctors that I have to see. So it's like a constant rotation of doctors appointments.

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Gal:  So much! It's so much work and it's so much spoons and it's like, you're like kind of, you get so drained by this constant thing that you have to deal with all the time, that you don't have time and spoons to do anything else. And speaking of dermatologists, the last time I went to a dermatologist, she told me she couldn't help me because I'm fat and I don't wear a bra.

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Simo_tier: Yeah. Thank you for bringing up that. That’s um, another issue like we're talking about all these marginalizations and that's like… the medical fatphobia is a huge problem. Like there are countless accounts of fat people going to the doctor complaining about pain, complaining about chronic issues not being treated because of being perceived as unhealthy and, and then severe things like people having cancer and that not being detected. The medical system is hostile towards all of us marginalized people. The medical system is not treating us and not being treated kills us. Sorry for saying it in this horrible way, but that's the truth. And this is exactly another example of how you're not being treated. If you don't fit into the norm, then you're a problem and then you're not getting the care you need. It's…

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Gal: Absolutely. And, and it's horrifying. And you said it just right. I mean, it's not like there… There's no need to sugarcoat this. This is like literally killing people. And I guess this is also why when you finally find a good doctor, you're like, hang on to them for dear life.

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Simo_tier: Absolutely. Yes, yes, this is like… It's… all of this is so much work and it's so much work even finding the good doctors, then you hold on to them as much as you can and try not to lose them. And then new things come up, and then it's another stressor on top of everything. When you have to go to a new doctor, on top of all the other appointments, you have to manage the mental load and the anxiety and the fear of rejection through our experiences. Like, like, I'm quite a, a veteran in this world, but still, I'm quite strong in this way, I have a good self esteem in these situations, but it all goes away when I have to go and see a new doctor. It is still extremely scary. I go there in this body mind that I exist in, with all my diagnoses and with all the experience of okay, when I go there, will I get treated? Will I get berated? Will I get the care I need, or will I get, in the worst case, abused or discriminated against? And do I then have to start all over again? So it's a huge ordeal every time when a new situation comes up. And then of, of course, as being disabled or chronically ill or ADHD, and I'm getting older, of course there's always something new coming up. Yeah, it's a constant fear of being in this situation. Thinking about what might happen next. Like, oh, will I get some new pain or something else will go wrong in my body? And then I know that in a way, my life will get derailed for a while because then all this new demand comes on top of everything else that is already there. So that's why it's, it's, it's just a lot. It's, it's very exhausting.

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Gal: Yeah. And it's so exhausting that sometimes you just kind of don't go to the doctor and just give up in advance.

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Simo_tier: Yes. Thank you for saying that because that's exactly it. That, circling back to the self-advocacy that sometimes maybe it's… sometimes it's maybe even a good decision to say: Okay, can I even do this right now? Can I take this load on top of everything else that's going on and the fear of being mistreated? Maybe it's better to sometimes even not go and to try to see if, if there is some alternative things one can do oneself. But we all, just to be clear, we would deserve the treatment, but it's not always possible.

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Gal: Yeah. Yeah. Also, you know, you have to prioritize. I don't know, like I already have so many medical appointments. If I have something that I can solve somehow without going to the doctor, I'm like, not going to the doctor and like, not, not, not another doctor and another everything you just said, like having to, to have this anxiety and fear and, and, and, and worry about the reaction. I actually kind of developed a bit of a special interest in home remedies and traditional medicines, just because this way I can avoid some of those medical appointments. Like if I have a UTI, I will, you know, I will start by taking home remedies that sometimes solve the problem. And if they don't work, of course I will go to the doctor. 

Oh my God, don't even get me started on UTIs. I mean, it's the same thing with the diagnostic. The first thing they ask you when you go to the doctor with the UTI, they ask you, does it burn when you pee? And like it doesn't burn when I pee when I have UTI. It's a totally different sensation. It's not a burning. And it's sometimes also when I'm not peeing. Like, I don't even know how to answer this question. And I, like you said, that it can really cost lives. I mean, my mom nearly died from a UTI. I mean, like my mom is now ninety one and may she live a long and healthy life. Like about ten years ago when she was in her eighties, like I suddenly got some emails from some people in my family and like friends telling me she's sick and I should get on a plane and come see what's going on with her. And I'm like, okay, I'm on the plane! So I went there, because she was lying in bed with a fever for three weeks. And I'm like: Mom, didn't you go to the doctor? And she's like: I did go to the doctor. You know, the doctor that I told you about earlier who actually figured out I had a muscle inflammation in my abdomen? The same doctor just sent her home each time telling her it's a virus, and he's a nephrologist! Okay? And, you know, he asked her if it burned when she peed, and she said no, because it didn't. Okay. And so I also didn't think about a UTI at that point. I just saw my mom lying in bed with a fever in the middle of the afternoon, which is not something she does normally. And I took her to the hospital and we spent a week in the hospital getting her all the kinds of tests that you can possibly imagine. We even found other stuff she had that was not related. I also had to kind of be the nurse for the entire room she was in, because it was understaffed. It was a total nightmare in many respects. And because of that, I also helped her go to the bathroom one day and it was a number one. And when she got off the toilet, I saw that the water was murky. And I was like, this is not what pee should look like. So I went to the doctor in the hospital and I was like, kind of, hey, could you maybe run another urine test, another urine culture maybe. And it was teeming! Okay? She had a UTI this entire time. Um, and even in the hospital, they didn't check for that, apparently because they asked her if it burned when she peed and she said no. Okay. And, like, she nearly died from this UTI. Seriously.

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Simo_tier: This is wild. There's so many things coming together. Like why? Why is one question determining what tests to make? How can this one question do that an older woman like this sick for several weeks, that it gets so severely dangerous, I can't get it together in my head. And it's exactly that what I said that you have to have like the… understand the question and then have the perfect answer. And bodies are different and, um, bodies change over time. And we don't always understand sensations as maybe pain and can't always explain what the feeling is. So if there are questions only, does it hurt? And then you say no. Even though maybe it stings or maybe it feels like a pressure. But that's not the question. So like, how do you do it exactly?

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Gal: And if you're, if you're autistic, you're like, I'm only going to answer the exact thing that they asked me very literally. Like, I'm not going to like…

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Simo_tier: Exactly, we want to do everything correctly. So we try to answer the question correctly. And this is like, this leads to these kinds of dangerous situations. And on top of that, it being like an older woman, as I mentioned, like medical misogyny and also being like an older person, like the discrimination against older people also happens, especially a person like that. And yeah, and an older woman who is, is that sick, that should be taken seriously, because infections get more dangerous when you're older.

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Gal: Yeah, I guess the doctor also got older. That's my conclusion because that was like twenty years later and maybe he wasn't on his game anymore.

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Simo_tier: But scary.

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Gal: Yeah, I'm lucky that I, I'm also pretty good at self-advocacy and I'm able bodied enough to like having been there with her in the hospital and like being her nurse there, chasing down the doctors and being, hey, are you sure it's not a UTI? You know, and all that and all like my home remedies and everything. These are kind of individual tactics, but it really can start and end there. Not everyone can do that. There are people who get situational mutism when they just look at the doctor. So like…

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Simo_tier: Exactly. It's, it's good to have individual tactics and to use what we have within our communities to help each other, but what is the most important thing, especially for people within the autistic community that maybe don't have other diagnoses, let's say like that in the broader sense, it's, we are part of this disabled community and we have to look and immerse ourselves in the disabled community and work within the disability justice movement in order to advocate for ourselves and for each other, because we share these experiences. And being marginalized on different levels makes us extremely vulnerable for the medical violence and neglect we've been talking about today, and what sometimes gets a little bit lost on the way is exactly this, that we have the higher difficulty then as autistics to have the communication with doctors or medical practitioners, and we have to share the experience we have in order to help each other out, and maybe to find out how to move within this system, like when we're being asked these questions, maybe not to think: Oh, we have to answer perfectly. To ask, what do you mean when you ask us this? What do you mean with the pain scale? What do you mean when you ask if this hurts? Can the… we who have experience with this and have been self-advocating and we who move within the disability justice movement have so much to share with others. So I implore you to be part of the movement because as we say, nothing about us without us and we can't change the system and the systems that hurt us if we don't do it together and share our experiences. So maybe that is a battle cry.

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Gal: It's an excellent battle cry, I love it. And in that context, I really want to thank you for sharing your experiences and your insights into that as an activist in the field. You really had a lot to contribute, and I just want to thank you for being here today.

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Simo_tier: Oh thank you. Absolutely. Yeah. It's always important to talk about these things and challenges, but also I always love to see how all of our experiences touch each other, that we have so much more in common than what divides us.

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Gal: Yeah, absolutely. It's, I mean, I guess this is part of the reason I wanted to do this podcast just to kind of also let other people hear about these struggles and know that they're not alone and that other people are experiencing similar things. And it's always a good feeling to, to know that I'm not the only weirdo with these problems. And I think also in this context, what you said about informing each other. I think it's not only just informing each other by telling people that, yeah, I also have this experience and so on, but also sharing tools with each other. Like I've seen stuff like the neurodivergent pain scale online. There are people out there working to create frameworks that will be easier for people like us to work with. 

And one of these things is prepped.to, which is this website my nonprofit created. And one of the things that I mean, there's sensory information in there, and there are service instructions and navigation instructions in there. And I think this is really important when it comes to like going to a clinic. If you can at least know in advance what this clinic looks like, what is the sensory situation in there? And who do you have to talk to to get your appointment? Who do you have to talk to when you get there? Where is the waiting area? Is there a toilet? All this kind of information is stuff that autistic people can upload onto prepped.to to help other autistic people prepare and any kind of people who are interested prepare before going places, including medical facilities. We currently have, I think, two medical facilities on there and I hope many more to come.  prepped.to is totally free, without any membership fees or premium tiers. The web address is prepped.to  prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. You can help keep the lights on at prepped.to is by donating as little as one Euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to -  know before you get there.

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Thank you for listening to our medical gaslighting episode. I'm Dr. Gal Schkolnik(pronouns: they/them), and today I was joined by Simo_tier (pronouns: it/they). Simo_tier is a multi-media artist and activist. If you want to read about Simo_tier’s activism (in German), check out its website https://vamky.de/ where you can also find a podcast (also in German) about disabilities and exclusion by society and inside the community. If you want to keep up to date with events it organizes, check out Instagram @simo_tier  

You can also find all these links in the show notes.

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I'm Dr. Gal Schkolnik, pronouns: They/Them. This episode was produced and edited by yours truly. Theme music by Lir Lutau Shahar. Lir is a composer and sound designer who loves to make whimsical and magical music. Listen to more of seas stuff at @lir_lurim on YouTube or SoundCloud. For collaborations, see contact in the show notes.

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‍Gal: Welcome to The Autistic Rant Hour, the podcast where we rant and infodump about the aggravating, the inexplicable, the unjust and infuriating in all fields of life, one episode at a time. The Autistic Rant Hour is part of the Autistic Culture Podcast Network. I'm Dr. Gal: Schkolnik, pronouns: They/Them. 

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Everybody hates bureaucracy. Applying for housing, a visa, benefits, assistance, all entail torturously collecting documents, attempting to upload them to websites that may or may not work properly, filling forms with mystery fields that you don’t understand or with missing options, and horror of horrors, calling the authorities on the phone. I recently founded Aut2Aut, a nonprofit that provides free digital platforms and content by and for the autistic community, and believe you me, the German authorities weren’t exactly going out of their ways to make it a seamless, easy process. 

So if you’ve ever stood powerless in the face of the powers that be, a half-filled form in one hand, and a phone that’s been on hold for the past 30 minutes in the other, and you want to feel less alone with your experience, or learn how to start a nonprofit in Germany, this is the episode for you. 

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But before we begin, let's first visit the end, so we all know what to expect.

I did end up founding Aut2Aut, it did end up getting an official nonprofit status, and I did manage to build a website you can find at prepped.to (Spell), where autistic folks can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. prepped.to is totally free, without any membership fees or premium tiers. You can help keep the lights on at prepped.to is by donating as little as one Euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to -  know before you get there.

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 So while I still need your help to make this thing really take shape and become financially sustainable, at least the story I'm about to tell you did have a happy end where I prevail in my struggle with endless, daunting, exhausting bureaucracy.

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It all started when I got fired from my latest job as a product analyst. According to my boss, and I quote: “because you were too dedicated to doing your job well, while we were more focused on moving fast.” You can hear more about adventures in product analytics in the relevant episode linked in the show notes. I was fired and immediately informed the misleadingly named German federal Employment Agency about my job seeking status, as they call unemployment around here. From past experiences of getting fired for being too autistic, I already knew the drill. And relative to other bureaucratic tasks I'll share with you today, this one is easy peasy. You just fill the online form, attach the letter of dismissal, and tell them when you'll want to start getting your unemployment benefits, which you are entitled to after being formally employed for at least one year. Then they send you an invite to an in-person meeting at some ungodly hour at the crack of dawn, where you bring the letter again with you along with the printed version of your resume, as if it's the nineteen nineties. Then your employment advisor looks at your resume, or mine, in this case, of course, looks at you, I mean me, back at the resume, then at the screen, searching something, back at me, back at the resume, back at the screen, and then says: So you're a product manager? I'm like: No, a product analyst. Maybe you have “data analyst”. You see, he has a list of possible professions, which has clearly not been updated since the turn of the century, and product analyst isn't one of them. Data scientist? He asks unsurely. No, I am, in fact, also a research scientist, but my most recent job was in data analytics, which is, as Douglas Adams put it, “Almost, but not entirely unlike” data science. The advisor realizes that this can go on all day, punches something in and tells me to go home, fill my job candidate profile online. Which, like: What did you need me to go to a print shop and print my CV for then? And then I have to also create a spreadsheet where I document my job applications, which should happen once a week at least.

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What this person didn’t know was that I had a different plan. Over the last two years or so, ever since work has yet again become insufferable, I realized that I was spending all my spoons on it, and there was barely any left for my special interest: community organizing, activism and advocacy, first for the nonbinary community and then for the autistic one. 

From the moment it became clear I was out of a job, again, I tried to figure out how I could turn activism into my full time job. But I also didn’t want to fall into the capitalist trap I saw so many well-intentioned social entrepreneurs fall into. You start a business, let’s say a social network for neighbors to connect and exchange on. And pretty soon you find yourself running an operation of flyer distributors to get the word around. Shortly thereafter, you realize you have to start selling ads and post pushups, and you open a sales department that becomes 80% of your operations. Or worse, you get investors and then have to fire half your staff on their whim, not to mention keep coming up with new products, features and angles, so you can endlessly grow your business for them or for your stakeholders. I wanted none of that. I wanted to keep being a socialist and an activist, and I figured since I was going to create something for the autistic community, I might be able to get funding for it from whomever funds this sort of thing. Spoiler alert: I haven't been able to do that yet, but that may be for a different episode.

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But anyway… A nonprofit it was! I started trying to figure out how to start a nonprofit, and after my brother, scarred by his experiences with German bureaucracy, warned me about it, I also tried to figure out whether I could do that elsewhere, while still living here in Berlin. Long story short: I couldn’t. Not without legal representation there. Not something you can afford on unemployment benefits. 

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But before figuring out HOW to start a nonprofit in Germany, I had to figure out what kind of nonprofit I wanted to start. gGmbH, a kind of LLC but not for profit, was unrealistic, because you needed a startup capital of 25 thousand Euros, which I didn’t have. 

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I was left with two options: a gUG, which is kind of the same, but with less capital, and you can start it on your own, but it requires a lot of bureaucracy and expensive help from lawyers and tax advisers, or an association, which would require finding at least 6 more partners, and then sign members up, and run yearly member meetings where the Chairperson will be voted for. This would mean a lot of cat herding (elaborate) and also I could get voted out as chairperson (explain why it's problematic for an autistic person).

I mean an association can be a great structure for when you're already organizing something with a bunch of people, but this was not the case for me.

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I just wanted to found a nonprofit, create some free online solutions and content for autistic folks, post about them in the groups and servers I'm active on, and hopefully convince enough foundations and individuals that what I'm doing is worth supporting.

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A gUG would be the perfect form for it, especially considering that I had only a few thousand euros I had saved to pay the lawyers and tax advisor and to pay on as the statutory initial capital.

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But how do I even do that?

I asked my friend Carolina, whom you can get to know in the Analytics and Tech episode, to put me in touch with Nakeema, founder and CEO of Frauenloop, a gUG dedicated to providing free training in tech professions to immigrant women in Berlin. I'll leave their link in the show notes. Nakeema gave me all sorts of great pointers, and a ballpark for how much the lawyer, notary and tax adviser would cost. “Don't give up your day job” she said, but I was already out of a job, and well, not everyone has the stamina to work full time, run a nonprofit and raise 2 kids like her. My maximum is either job or activism and no kids. My 3 cats are all the responsibility I can handle.

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At that point I turned to Deepseek, a new discovery for me, and asked it where I could get advice about starting a nonprofit.

No problem! The overexcited and over optimistic bot typed back. The federal employment agency can give you funding for a founding coach, and you can also apply for a founding grant. Easy peasy! Here's how.

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It explained what I should write to my employment advisor with all the correct official names. And it advised me to apply for 40 hours of coaching, since I don't have any experience as an entrepreneur. So I did just that. When my employment advisor saw my request, he summoned me to a meeting, mercifully online this time, and explained to me that a founding grant is only given to individuals who can convince the federal employment agency that they are likely to succeed in their enterprise. So he could only give me 20 hours of coaching, to be used within 6 weeks, and that if I needed more, it meant that I didn't qualify anyway.

Also he didn't have the budget for any more, so if I really wanted more coaching I should go find some myself. There are other free coaching resources out there. Just search for them online.

So I did. I found several offers and emailed 3 of them. One didn’t reply. One turned out to be unavailable, and one was ZGS, a nonprofit that gives pre-founding coaching to founders, if they pass a 4 day assessment center. I had an initial zoom call with one of the employees there, who was very kind and respectful, and we set a day for the assessment center, which was really going to be a 3-day remote intensive founding workshop, and a 1-day in-person meeting.

The assessment center was actually pretty cool! We got to do exercises such as write our elevator pitch, draft our timeline and do  SWOT Analyse (Strengths, Weaknesses, Opportunities, Threats) for our business. We’d go work on our own, then meet again to present to each other and get feedback from other participants and the coaches. 

I’m not totally sure of course, but it seemed that out of the two coaches and the 6 participants only one coach and one participant were neurotypical. It was really cool! When we met on the in-person day, I raised the question to two of the participants if they might be autistic too. One of them said she already started a diagnosis, but as it seemed increasingly likely that she’d get an autistic diagnosis at the end of the process, she freaked out and left in the middle. She was worried that being officially registered as autistic in Germany could have unforeseen repercussions that could be detrimental to aspects of her life, from business to parenthood. 

The other one had never heard of AuDHD. She went home, researched it for two weeks, and got back to me with a positive answer. We are friends to this day, and she designed the Aut2Aut and prepped.to logos.

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All of the participants passed the assessment centre and got fifty hours of coaching each, but with the catch, the fifty hours had to be done by the time we officially founded. In hindsight, this is such an unhelpful limitation, because a huge part of the coaching was to create a business plan, which was about as much work and text as my master's thesis, but which is completely based on our imagination. The business plan included stuff such as what the business would offer, what sets it apart from competitors, founders and personnel, a market analysis and marketing plan, income versus expenses, and when would it break even, and sustainability, Which are all very important considerations, but they are all up in the air when you decide on them months before even having founded.

As an example for how detached from reality it all was: In the time between writing about the market potential of a nonprofit creating digital solutions for and by the autistic community, Trump announced DEI as the source of all evil, with many huge corporations following suit, and RFK Junior announced that autism is caused by tylenol and suggested sending neurodivergent people to re-education camps, or as he put it “wellness camps”.

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The really great thing about the coaching was that I got to learn stuff about creating a budget, crowdfunding and marketing messages.

One of my coaches turned out to be autistic too, which was news to her, at 50+. The other one was kind enough to put me in contact with location owners and helped me script an email and a visit to document their locations, so prepped.to starts with some fully documented locations. 

And of course, my coaches gave me the deets on all the bureaucracy I would have to go through to really get founding. I got to do lists and timelines from my coaches, and I’m here to tell you all about them and about how they went sideways and took much longer than expected, with all sorts of unexpected cliffhangers, right after this break.

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We're back from break. And listen, I know why states need bureaucracy to run. You need standard operating procedures to know what to do in each case, so you don't have to think what to do each time anew, and also to prevent functionaries from favoring their people when deciding what to do. And you need regulations to prevent the rich and powerful from stealing from the poor and powerless, because given the chance, they will, as we can see in the unregulated parts of the world. The problem begins when to navigate the system you need to hire so many professionals that the rich and powerful have way more chance of managing to get anything done than you and I do.  They can get better lawyers and tax advisers to be more successful in founding their initiatives. They can survive longer without any income when their business is taking its first steps. Even if they do everything on the up and up, they are still more likely to succeed than I am. And this goes not only for evil individuals or corporations out to get your dime. It also applies to big nonprofits that have cornered the market on anything autistic, even though they aren't representing autistic people. They employ so many people and have such strong lobbying operations, that they aren't likely to ever struggle the way some autistic rando like me does when trying to start an actually autistic nonprofit.

That's why I'm ranting about it here. Not only because it's frustrating and exhausting. So let me tell you what it's like when you aren't rich and powerful. It's time to embark on a bureaucratic adventure.

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The first thing I needed to do was to get an address for my business. The thing is, you can register your business as residing in your own home address. But I didn't really want to do that, because then I would basically be advertising to the whole world that I'm autistic. And also people who have some ideas about autistic people could find my address and find me at my home, once they can see my business registered in the commercial registry with my address publicly available for everyone. So to get a business address, what I did was get a virtual office that for a certain fee, puts the name of your business on the front door, so that you can use it as an official address for registering your business and also get your mail there. And they forward your mail to your home address. 

Another thing that was very important to get was a business email address. The thing was, I was waiting for the official nonprofit status in order to apply for a Google workspace, which is free for nonprofits. I could probably do a whole episode just about how complicated getting that workspace from Google for nonprofits was, but I'm not gonna. 

The thing was, I knew I would have to have a business email address way before I got to the point of having my nonprofit status confirmed by the German tax authorities. So in the meantime, I got myself an email forwarding service that basically lets you email from and receive emails to your official email address, as long as you have the domain, which I had already bought.

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I also wanted to get a law firm to help me with all the bureaucratic heavy lifting, like communicating with the commercial register and with the German tax authorities, and also for creating the statutes of my nonprofit in a way that the tax authorities would actually recognize it as a nonprofit.

Another thing on my list was to create a bank account and pay the statutory initial capital into it. Choosing a bank wasn't just a matter of choosing the cheapest bank, but because it's a nonprofit, what I wanted to do is find a bank that would also have some kind of ethical standard, so that my nonprofit isn't involved in investments in weapons or all sorts of other nasty financial practices.
I had to find a notary to actually create the registration of my business, and I wrote emails to many notaries, and they all said that they didn't have space for new clients. Oh, and I also needed to get a tax advisor, because you can't really keep your non-profit status if you don't know how to file your taxes in a way that reflects the fact that you're not actually drawing any profit out of it, but only paying for the necessary expenses for providing the service that is written in your statutes. So I had to find a tax advisor. I looked around and I had some recommendations from people who were involved in other nonprofits, and I wrote to all of them, and gratefully, one of them actually got back to me and said, that was in April. He said: I don't have space right now, but contact me in July if you're interested. As you'll find in a moment, July was the perfect timing for me to contact that tax advisor.

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Then there was the like more heavy duty stuff. I already mentioned the registration in the commercial register. I also had to not only have the statutory initial capital in the bank account, I had to have an opening balance sheet drawn up and get the tax number, which was also necessary for getting started with web hosting and a bunch of other things where you are doing official business and you need to tell them your tax number. The most important part of it was getting a statement on nonprofit status from the tax office. I needed that first of all, for tax considerations, but also to apply for free use of Google, Microsoft and Canva, for example. As part of their nonprofit programs, and also to get access to crowdfunding platforms that are specific for non-profits and therefore have lower fees. 

I had to hire myself as a CEO, which is a hilarious part of the bureaucracy, which I mean, it's annoying, but it's also so funny that I, I don't know, I found it amusing. I basically have to write an official document where the assembly of the shareholders, that includes only myself, decides to hire a CEO who is also myself, and then sign it as myself, as the shareholders, and then draw the CEO contract, which has to be something very specific, and that was provided by the law firm, and sign it once as myself, the shareholder of the nonprofit, and another time as myself, the CEO of the nonprofit. It was hilarious. 

I also had to figure out which bookkeeping software I wanted to use, set it up and learn how to use it. And I also had to take out a legal insurance and a different insurance, which is the business liability insurance. I did make a mistake there at first. I first got a business liability insurance that turned out to be only about physical damages that can happen to other people or equipment while they're in my business, which like as I said, I only have a virtual office that forwards me my mail. The rest of my business is me sitting at my laptop at home. So like that wasn't very relevant. And then I had to cancel that and get the business liability insurance that also covers economic damages, which is more relevant in my case. And after everything is said and done, I have to also register the non-profit in the transparency register and inform the employment agency about my status working for the nonprofit that I created, and then create the Google workspace. And I also had to create the Microsoft Workspace because, as said, Google were being very particular and it was difficult. So I had to get both.

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So while I outlined this process to you now, like in a little legend where everything works one step at a time, one step after the other. Unfortunately, real life did not look like that at all. From the moment I contracted the lawyers till I had a tax number, 4 months had passed. 4 months during which I could not finish my website or start my crowdfunding campaign, because I had no tax number and couldn’t transact as a business. So each step I completed was stoking up my hope to get started soon, and each plot twist was disheartening and exasperating, which I’m sure was not helped by my expectation sensitivity and my need for predictability and structure.

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And this is what happened.

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On June 18th I contracted an online law firm that communicates by email only, which was the most affordable option, to help me with the formalities. The idea was that they would help me write the nonprofit’s statutes in a way that will ensure receipt of a nonprofit status from the tax authorities, and then send it to the Tax Office for approval. They would also help me find a notary, who will then register my business with the Commercial Register. After having written emails to several notary offices, who if at all, replied saying they were too full, this was actually an important part of the service.

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The email-only communication was a mixed basket. On one hand, it had the advantage of no phone-calls. I find phone-calls overwhelming and difficult even in languages I control. But the likelihood of me understanding what they even said on the phone in German was pretty small. So having all the legal information in written form was a huge advantage.  On the other hand, emailing with this particular firm turned out to be rather sluggish.  While I always replied to their emails on the same day I got them, they took their sweet time, and would reply within 2-6 days. So it happened that it was already July 9 that the lawyers sent my Statutes to the Tax Office to review and set a notary appointment for August 18. They said that the review at the tax office could take about 4 weeks, so if I didn’t get an answer within 4 weeks, I should phone the Tax Office to ask what’s the hangup. 

While I was waiting for the tax office to have a look at my statutes, I was already busy building the parts of the website I could do on the free plan, creating crowdfunding assets and creating designs for my print on demand shop.

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On August eleventh, I realized it had been more than four weeks, and no word from the tax office. So I called them on the phone. When I finally got through to them, they said that they never got the statutes and that it would take eight more weeks from that point for them to read them, and could I send them over ASAP. So first of all, I sent them the statutes. And second, I wrote an angry email to the lawyers. The lawyers wrote back, pretty taken aback, and sent me proof that they electronically sent the statutes to the tax office via this very convoluted computer system called Elster, which sounds so cute. It means magpie in German, but it's not cute at all. They basically sent the statutes via the Elster and got a digital confirmation. I told them they should have called to confirm receipt of the file they sent digitally, and eventually they apologized about that and said they'd update their workflow accordingly. They also said both I and they should call the tax office and pressure them again. So we both did. And lo and behold, on August 30th, a mere three weeks after that fatal phone call, I got a positive reply from the tax office. They approved my statutes and now I could set a new appointment with a notary. Luckily, the notary happened to have a slot on September 2nd. It was all a bit precipitated for my taste, but I changed some plans, put on my nicest clothes, combed my hair and went to the notary.

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I think the notary's office was the fanciest place I've ever been to. It was so fancy. There was a doorman who was so attentive and friendly and was dressed way better than me. Everything was so gleaming and new, and the conference room I was sat in to wait for the notary had huge windows with a wonderful view, a big flower arrangement and all sorts of drinks lined up on it. The notary came in and was thankfully a very friendly person. She didn't seem stuck up or judgmental in any way, and that was a huge relief for me because I get anxious in fancy places. I'm like a fish out of water there. I was never fancy and I just don't know what to do in such places. But the notary also understood that it was my first time starting a business, and so she tried to lighten up the atmosphere. She told me she was going to now read my statutes to me, as well as all sorts of other legal texts, and joked that this was going to be the most expensive story time I was ever going to have. And she was right. She read it all as fast as humanly possible. Made me sign on the dotted line, and half an hour later I was out of there and the notary told me she would send the statutes to the commercial register., the moment she got word from me that they had been initially accepted by the commercial register, something that apparently my lawyers forgot to inform me about, but had already happened. From that point, it would still take six weeks before the commercial register would actually allow me to come in person and pay the registry fee.

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But first, a plot twist: On September 27th, I recovered from ten days of Covid and finally went out to shop for groceries and take my trash out. In my mailbox I found a letter from the tax office (It was lying there for twelve days or so from September 15th) where they rejected my statutes because of two minor details that had to be changed. Just as a reminder, the tax office had already accepted my statutes on August 30th. And now suddenly they want me to make two minor changes. But such a change would mean paying the notary again. And we're talking about 800 Euros here. And of course, also waiting for about three more months for the tax office and commercial register to do their thing. All the while, my unemployment benefits would be running out and I wouldn't be able to start my business. 

I wrote the lawyers, who took ten days to get back to me, only to say it was indeed weird and suggest I call the tax office to ask what was going on. My response was: Look, I can call them, but I wouldn't know what to say and I wouldn't understand what they said back to me. So please be my lawyers and call them yourself. For a whole week, the lawyer tried to reach the person signed on the contradictory statements, and eventually got hold of her. She explained that I could go ahead with the founding, and the first positive statement would hold, but that I should change my statutes according to the second statement “at some point.” So I went ahead, paid the registration fee, and my business got registered about mid-October, four months after I first contracted the law firm.

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It was time to get my tax advisor to fill a form with the tax office and request formal nonprofit status. His professional opinion was that I should restart the whole process to fix the statutes, because the decision reached now would also affect my status till the end of 2026. I told him I couldn't afford it and that I will have to take the tax office manager at her word and hope she approves my nonprofit status. Worse comes to worse, I'd have to start a for-profit for a year. Magically, the approval this time only took a few days, and on October 21st, 2025, I had a tax number and a nonprofit status. The moment I got my tax number, I could also get started on the rest of the website. 

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On November 26th, 2025, I launched prepped.to. At first it had only fourteen locations: the ones I documented and uploaded at the locations I got introduced to you by my coach. Since the launch to the day of this recording, about fifty more locations have been added. About half of them by myself and the rest by awesome autistic people who decided to take a few minutes out of their time to inform other autistic folks about sensory conditions and service instructions in locations so that they can prepare before going there.

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I have been able to get less than 800 Euros in donations. 525 Euros of those were from generous strangers, the rest from generous friends and family. Three people, two of them my friends, bought something on the print on demand shop. I started a blog which has been the main source of traffic to the website, along with posts on Mastodon. I'm still trying to figure out how to get more autistic folks to hear about the website and upload locations, because it's only going to be as useful as the locations we upload. I'm also still not sure how to jumpstart the crowdfunding campaign. Even 1 Euro a month of recurring donation could be a huge help. And of course, any kind of donation would be a huge help. And I still have to raise about 2000 Euros to pay my tax advisor each year. And he's crucial for dealing with the German Ministry of Finance and not losing the non-profit status I worked for so hard. 

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You can find links to the website, the crowdfunding campaign and the shop in the show notes. Any help would be greatly appreciated, including ideas on how I could do better at this.

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In the meantime, however, I've been having to deal with another aspect of bureaucracy that's intentionally built to make life harder for folks whose life is already really hard, and to, in fact, discourage people who need help from seeking it and prevent them from succeeding in getting it. After the break: The welfare system.

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We're back with the Autistic Rant hour. And as I mentioned before, at first getting unemployment benefits was pretty easy. All I had to do was inform my employment advisor about anything I was doing with my life. And because he was pretty impressed and maybe even moved by my initiative, he wasn't getting on my case to find a job. To be honest, if anything, his response to my nonprofit was a bit too overenthusiastic, and I felt he thought autistic people shouldn't be able to do such things. But anyway, he went along, and while I was getting my unemployment benefits monthly, because I saw how long things are taking on the bureaucratic front of founding, I did actually try to follow Nakeema's advice and find a job. Unfortunately, the German tech market is completely swamped by people like me right now. Product analytics and data analytics professionals with many years of experience under our belts that have been fired or laid off as part of the general disintegration of the German tech industry. And so it happened that early November I had to apply for what they call in Germany Citizen's Income, because my unemployment benefits were running out a little bit after December.

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So what is Citizen's Income? Basically, the German welfare system endeavors not to kick you out on the street, to die of exposure and hunger or live in a tent, the moment you can't pay for your rent and your food, so they cover your rent, as long as it's under a certain limit that they deem reasonable, and also give you about five hundred euros a month to cover your other costs, which, to be honest, is not actually enough to cover your needs in a month. Along with these benefits come a bunch of other benefits. Like you suddenly don't have to pay for the National TV Corporation and you can get a cheaper public transport ticket. This kind of thing. So this is, I guess, a kind of a privilege that people who live in countries with a functioning welfare system have, and Germany is no exception. So early November, I submitted my application for this Citizen's Income, because I knew I was going to need it to make ends meet towards the end of December. In the meantime, for November and half of December, I was going to still get my unemployment benefits, which were much higher, because they're calculated as a percentage of your income in the year previous to becoming unemployed.

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Come the end of November, I didn't actually get my unemployment benefits. It took me a few days to figure that out, because, as you might remember, at the end of November I also launched prepped.to. So I was kind of busy doing that. And only sometime in the beginning of December I finally realized that my account was in a huge minus because I never got my unemployment benefits and I did automatically pay my rent and some other bills. So I used the practical digital interface for the German Employment Agency, and I sent them an email asking them what's going on. A week passed and I got no reply. So I realized I had no choice and I had to call on the phone. I called on the phone, spent thirty, forty minutes on hold, and eventually I was greeted by a pretty friendly functionary, and I explained the situation to her. She was pretty confused at first for some reason, and put me on hold again for like fifteen minutes or so, to try and figure that out. She got back to me and asked me: Say, what is your gender entry in the civil registry? And I was like: My gender entry is no gender entry.

You see, in Germany you can delete your gender entry. Actually, in the German civil registry there are four kinds of gender. There's male, female, diverse and no gender. And my gender is no gender, ever since I deleted my gender entry a few years ago. I could probably do a whole other episode just about gender legislation in Germany, because I was pretty active in the struggle for gender self-determination in Germany. But anyway, my gender entry was no gender, and I told her that. She was pretty confused and asked me to stay on hold for another ten minutes or so while she consulted someone. Eventually she got back to me, apologized for the wait, and told me that they have installed a new payment system, one that doesn't recognize the gender “no gender” as an actual gender, and that that was why I never got my payment for November. The system, who demands a gender field, because that's of course extremely relevant for getting your unemployment benefits, saw that my gender was no gender, assumed that a gender was not entered, and because it is, again, a required field, for some obscure reason, didn't pay me my November unemployment benefits. The functionary was pretty apologetic when she asked me if I minded to change my gender to diverse, which is also a kind of nonbinary gender that the German law allows. To be honest, I really didn't want to change my gender in her system to diverse just to get paid, but I also really needed to get paid because my bank account was badly overdrawn, and that could be covered by the payment that I counted on to begin with to pay my rent and bills. So under duress, I said yes, she could change my gender in her system to diverse so I can get paid. She did that and I got paid, but I thought: I don't know, at some point I might have cause to take them to court for this discrimination. Right now, I haven't suffered any damages, but who knows. So I sent them another email asking them to send me a letter explaining the situation so that I can explain the situation to anyone who got paid late because of the late unemployment benefits payment. A few days later, I got a letter that only stated that the unemployment benefits were paid late and apologizing for it. No mention of the gender entry.

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Another thing that happened in December, apart from getting that overdue unemployment benefit payment, was that I got some money back from my landlord, which is a public holdings company that really freaked out during the first couple of years of the war on Ukraine, and just hiked the prepaid heating costs, just in case the gas prices went up so high that all its tenants would be suddenly left with huge debts at the end of the year. However, this holdings company was also extremely slow at giving you the actual bill for your heating expenses, and I got my bill for 2024 in December 2025, just at the last moment they could send it to me without actually giving up the payment that I might owe them. But in this case, they owed me. They owed me a lot of money because they were just charging too much. So I got more than 1500 Euros back from them and I was pretty happy about that. That could actually help me survive another couple of months on Citizen’s Income, which doesn't actually cover my expenses at all.

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However, towards the end of December, I got a letter from Jobcentre, which is the entity that gives you your Citizen’s Income, informing me that I wasn't going to get any Citizen’s Income in December, February and March. And also it was going to be severely cut for the rest of the first two quarters of 2026, because they counted the heating costs that I got back for 2024, as well as the late payment of the November unemployment benefits as income for the time period I applied for the Citizen's Income for. I was going to have to pay for my expenses from my very meager savings at this time, which have been decimated by both the costs of the founding and by having to draw on it to supplement my unemployment benefits, which were also not enough to cover all my expenses. 

Luckily, I had legal insurance, which is something that anyone in Germany should have because there is so much bureaucracy with so many rules, that always tries to screw you over. And having a hotline with a lawyer who can tell you what to write in an angry letter can go a really long way. So I called the hotline and I got all sorts of advice I'm not going to get into right now. And I sent some letters. I sent them registered to make sure that I had proof they reached the hand of the person who had to read them. As it turned out, there was nothing that could be done about the heating costs. Although I was getting paid back for having overpaid in 2024, way before I was even unemployed. This is counted by law as income, and because it's considered as income, it is deductible from your Citizen’s Income because you have income, so why should the state pay you anything? In short, I ended up paying the state for having been overcharged for my heating by my landlord, who was, you guessed it, the state. 

And then, of course, there's the matter of the missing unemployment payment. The unemployment benefits that weren't paid to me in November were paid to me in December, and then promptly taken back by the same body that paid it to me: the German work agency. Yes, it's the same agency also doubling as Jobcenter. And because their new payment software decided to discriminate me based on my gender or lack thereof, I now have to pay my November unemployment benefits back to the same agency that didn't pay them to me on time in the first place. That's some really amazing magic trick on the part of the German work agency. The issue is currently in the phase of sending angry letters in legalese to everyone involved, and hoping some of it sticks. To be honest, I really need to get that money back. And not only because it's totally unfair to discriminate me and steal money from me just because my gender is “no gender”.

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Actually, this story has been so complicated, and I had to send so many letters to these people that the last letter I sent, I had to actually come and hand in in person. Why? Because you only have thirty days to appeal the decision about how much money you're going to get as your Citizen’s Income, a limitation that's also extremely unfair for people who are already struggling. But okay, I had a reduced public transport ticket and no job. Right? Except, of course, for running the nonprofit. So I got on the metro and then changed to a tram and went to the building where the jobcenter lives. And when I got in, all I wanted was to just hand this letter and get a little note that says that I gave it, and the date. 

I waited in line about fifteen minutes just to talk to the receptionist, who seemed like a cool queer person from far away, but from close up turned out to be some kind of the gatekeeper of Hell. He told me in very quick German, that I only understood part of, that opening hours for unemployed people are only till twelve thirty, and it was already one. And I was like: Your opening hours are till six o'clock. And he's like: You should have known that for unemployed people it's only till twelve thirty. And I was like: How would I know? I've only been getting Citizen’s Income for a month now. And he was like, well, can't help you, sorry. And I was like: Where's the bathroom? I went to the bathroom, did my business, and relaxed a little bit. The bathroom is such a great getaway, right? I did some thinking and I realized I'm not unemployed. I'm an entrepreneur. I've founded a business. I have a business of my own. I went back out, waited in line for another ten minutes and asked him: Wait, are entrepreneurs also considered unemployed? I'm an entrepreneur. And he was like: No, if you're an entrepreneur, welcome! You are not unemployed. You are working as an entrepreneur. Please go and talk to that nice lady over there. I went over there. The lady was nice. She helped me. She sent me to walk around some winding corridor from Hell and wait to another actually nice lady who came and took the letter and signed the paper that said that I gave the letter.

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Now, I'm a pretty insistent person, I know how to advocate for myself, am mostly aware of my rights, and learnt from watching my mom how to doggedly demand them from the authorities. You see, raising me alone in poverty, even though she was fully employed, she also had to deal with these systems, and I saw it all play out in real time. So I'd say I'm pretty well equipped to deal with these things, even as an immigrant, in my hopeless German. 

But what about other folks, who can't stand up to authority, who don't even suspect they are being played by them, who end up blaming themselves? Those whose executive dysfunction makes them miss deadlines and be late to meetings? Those whose situational mutism won't let them demand their rights? People too anxious to make that phone call and folks with multiple disabilities and mental issues. And of course, people living in countries without a welfare system to begin with.

If I, with all that's standing in my favor, am struggling so much, how do others even make it?

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In the end, regardless of the level of our privilege, the situation of folks who need help getting by can be much improved by the community and professionals they have access to.

And if there’s one thing I learnt so far from this experience, it’s to appreciate and cherish the help I’ve been getting from folks along the way, be they paid professionals or a friend’s friend with some relevant experience.

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Thank you. Thank you for listening to this episode about bureaucracy, founding and the welfare system.

I'm Dr. Gal Schkolnik, pronouns: They/Them. This episode was produced and edited by yours truly. Theme music by Lir Lutau Shahar. Lir is a composer and sound designer who loves to make whimsical and magical music. Listen to more of seas stuff at @lir_lurim on YouTube or SoundCloud. For collaborations, see contact in the show notes.

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‍Gal: Welcome to The Autistic Rant Hour, the podcast where we rant and infodump about the aggravating, the inexplicable, the unjust and infuriating in all fields of life, one episode at a time. The Autistic Rant Hour is part of the Autistic Culture Podcast Network. I'm Dr. Gal: Schkolnik, pronouns: They/Them.
You know how they tell you that websites and apps collect your data and follow your every move, and then design their product to get the most out of you?
And you know how each and every time a digital product gets updated, it gets worse and harder to use?
How can both of these be true?
Well, let me get you in on a secret I've learned during seven years in product analytics: It's true that most, though not all, websites and apps collect your usage data. But most of them just let it rot in dashboards nobody looks at, and release major features and redesigns without performing any mathematically rigorous analysis of the user's response. My product analytics ex-colleague Carolina:, pronouns: She/They will join me on this episode to rant with all our accumulated frustrations about the sad, sad fact that most digital product providers really don't care about your data. And also just in general, about being autistic in tech.
You can also find Carolina: on Instagram @millennialspinster. I will add a link to the show notes.
Great to have you here, Carolina:.

Carolina: Thank you.

Gal: Language warning: This episode contains a couple of slightly adult words. Please see details in the show notes.
But before we begin, let me tell you about something we can actually do about one of those aggravating things. I'm sure you know that moment you walk into a new place and realize you have no idea how to get what you need. And the sensory environment is already overwhelming you. I'm founder of Aut2Aut, a registered nonprofit that provides free digital solutions and platforms by and for the autistic community. One of those is prepped.to, a website where you can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is totally free, without any membership fees or premium tiers. The web address is prepped.to 
prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. Another way you can help keep the lights on at prepped.to is by donating as little as one Euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to -  know before you get there.

So let me just get started by explaining what product analytics even is. It's all about assessing and measuring the performance of a digital product, both as a whole and of each of its components in particular.
For example, if a company has a website or app: How many users visit or install them? How many users return after their first visit and how often? How do users respond to emails and notifications? Do they click on them? Do they do the thing they were supposed to do after clicking on them? Where do they come from when they visit the app or website? What do they click on? Do they do the stuff the company wants them to do? Do they get lost or drop off before they can do that? How do they react to changes to the app or website?
As an example, on prepped.to, I have installed a free plugin by Microsoft called Clarity (who sadly is not paying me to promote it) and this allows me to see, for example: Out of the users who got into the “Add Location” page, how many actually ended up adding a location? It doesn't tell me why though, and I'm not getting any personal information about them.

The thing is, to answer any of these questions, you need all sorts of technical stuff such as data storage and data visualization solutions, and we'll get to those later. But what you absolutely cannot do without is event tracking.
An event is anything a user does on your website or app, such as open a page, click on a link or button, fill in a form, or watch a video. To track those events, someone has to add tracking to the code of the website or app. This can be done by software engineers, aka programmers or developers or devs. Or you can use an out-of-the-box solution that allows non-engineers like me to inject the tracking events into the code. This is what I did at one of my jobs. When I got there, I was horrified to find out that there was no tracking in place. This actually happened to me on two occasions. So if you think that each and every app and website you visit are tracking your every action, well, not all of them do. Some of you might be relieved to hear that, because you don't want your actions to be tracked. But there's also a downside: If there is no event tracking, there can't be any product analytics, and things can't be improved according to how you, the user, behave on the website or app. Whoever builds it just throws things at you and hopes for the best. But the best is unlikely to be the outcome of simply not knowing what users do on the website.

In one of the places where there was no event tracking when I arrived, the moment I raised the importance of it, developers were allocated to creating, maintaining and storing tracking events. But in the other, the head developer was simply against it. He hated me from the first moment, not because of professional disagreements, but because being autistic, and not having heard about office politics up to that point, I just told him it was unacceptable to post humorous memes with naked women in them on the general channel in the office Slack. While his boss had to confirm I was correct in my assessment, probably to avoid a lawsuit, I was later approached by one of the other executives who told me that I shouldn't underestimate the effect of constantly pointing out sexist practices in the office. Being autistic, I didn't understand that he was asking me to stop doing that, and in fact, threatening to fire me if I didn't. Also being autistic, I didn't realize that I wasn't supposed to reply: “And you shouldn't underestimate the effect of constantly being infantilized and objectified your entire life.” Another thing I didn't realize at the time was that I was in fact, autistic.
Long story short, I ended up implementing the event tracking using a no code solution that allowed me to inject the tracking events directly into the website's code, and I documented it meticulously in Excel files. About a year in, after, according to rumor, the head developer announced that it was either him or me, I was fired. And once I was out of the way, he deleted all the tracking I painstakingly implemented. For years, this website had no tracking on it and also no product analyst. They just built it and never looked back. When eventually they realized that they actually did want to know what users were doing there, they hired a product analyst, who dug up my old documentation and implemented my tracking all over again.

Carolina: Oh yeah, absolutely no surprise there. And you know what's the worst part about that? That that whole time they could have recorded or stored the data of like what their users were doing. They didn't, because they just deleted your work and now they had to hire a whole new person. And then they only are going to have data and they're only going to have insights, you know, from that moment on. Had they left it as it was, by the moment that they hired a new person, they at least would have a base.

Gal: Yeah.

Carolina: And, yeah, people don't think about it because, yeah, because you only start getting information on it from the moment you actually do the work of implementing it. Because I think, yeah, like tracking is really like underestimated in like the product development process because it's not a step that, you know, engineers, developers, have like top of mind necessarily, because it doesn't really do anything to the things that they're trying to make happen in the sense that it's not part of that code that makes the function function.

Gal: Yeah. Like they're trying to make something work and look a certain way. Tracking it is not part of that.

Carolina: Exactly. It's not like a line within that code. No, it's like a separate one that is pretty short and straight to the point. But yeah, it's like an extra step that doesn't move anything inside of the product itself. And then its value is like an investment, you know? So you see it later.

Gal: Yes. It's also not necessarily relevant for their work, right? Like, because the analytics is something that later is going to be relevant for the product manager and the designers, but not necessarily to the developers. So like, they, they can't be asked to think about it on their own.

Carolina: Like definitely, yeah, I wouldn't expect that necessarily. But also from, you know, product managers and stuff, it's not top of mind and not in the way that it makes sense actually. Yeah. I was in a meeting just like yesterday or something and I informed like my manager that: Oh yeah, it turns out that they implemented the tracking for Android, but the tracking for iOS hasn't been implemented. Exactly. And then she was like, oh, I wish they would just like implement tracking correctly. Right? And I was like, yeah, that's kind of the point. But like, yeah, it's, it's like a buggy before the horse thing to no end and you're just like pushing the horse, and then the horse is like pushing the buggy reluctantly. It's kind of like that.

Gal: I can really visualize this horse now, exactly.

Carolina: And then you're trying not to get kicked.

Gal: Whoa!
And like, then there is the question of documentation because, like. I mean, okay, for it to be implemented correctly, someone has to decide what tracking will go where and what it will be structured like, so later it can be filterable and you can use it in queries and so on. But also once you decide that, you have to write it somewhere.

Carolina: It has to live somewhere.

Gal: Yeah, yeah, and someone has to find it there. What's your experience with that?

Carolina: Documentation inside of teams, I think, yeah, it's easier to accomplish than across teams. I've been in like analytics teams, where like we documented very well and I learned that from the team. And it was not only about having it there, but also like about learning about it. And I really like that attitude, but it's different in different teams. And also when you're sharing a document or a messaging system where like engineers and like where QA and with this and with the other and everybody leaves comments and then you go through like the comments.

Gal: Oh, no!

Carolina: The documentation, because maybe the comments are like an addition or a change to… so it's, it's like a rabbit hole. And then, you know, there's different uses for documentation. And in this case, it's like for the process, it should help ease the process and make it something you can reproduce. But it's hard because then nobody reads it. Nobody like wonders like, oh, how they did that last time. Let me look it up. Everyone wants to reinvent the wheel. I don't know.

Gal: Yeah. And also like different roles use different places to document. Like I would document it on an Excel file, but the developers wouldn't look at that, would they?

Carolina: No. Yeah, exactly.

Gal: They want it to be on the design in the Figma where it says what the feature should look like. To those who don't know it: Figma is basically a software where you can put designs and you can put comments on these designs or like little notes on them. And so what they want is the tracking to be in these little comments, in these little notes.

Carolina: And it's: imagine a pin board inside a computer, and then you have sticky notes where you write text, you have to type it. And then yeah, with your mouse, you put it there. And so that's Figma. And you can have like more advanced stuff for design itself, but for more process things, where more than one field is involved, it's just a bunch of post-its and like screen caps in a big square, looks like paint. I'm like: How are you gonna organize a process in something that kind of looks like Microsoft Paint? You know, like I need, I know it's because we're analysts and stuff and, but yeah, I need like rows and columns. I need coordinates.

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Gal: Exactly. I mean, because also like it has to be structured because it’s a structure

Carolina: Like a wiki, you know, like either columns and rows or something or like a wiki: that's necessary. And then that's another discussion, which feels like, you know, the, the buggy before the horse, which I think is like just, yeah, like at least for me, like a description of like being, you know, neurodiverse or like autistic at work sometimes because a lot of things feel like that because you're like, I'm following kind of like common sense and logic, and it's not necessarily what everybody's like following. Not that I'm right or anything, but, you know, like people want to work on things that have visibility. People want to work in things that represent like disruption or make big change. And I'm like: But does it make sense to do that? Let's just check. Let's just check.

Gal: Yeah, exactly. And I mean, also common sense: It's only common within the place that it's common in. So like if we have the same common sense because we're both autistic, then some other people who are neurotypical will have like a different common sense. I guess that's the whole double empathy problem. And I mean, for me, putting things in a table is the most visible and useful way to do it. But I guess some other people think that common sense is to put it in a sticky note next to the feature that it's tracking. So like, eventually you end up having both and having to like, whenever you change one, you have to change the other and then no one looks at it ever again.

Carolina: Figma is the bane of my existence, like work-wise right now. Well, that and Microsoft Teams, but like Figma on essence, like because of what it is. Like, I know, because I work with a table that's like black and white, and then I make like some charts and I accept like two types of charts that I make. Figma feels like Pinterest to me a little bit, you know?

Gal: Yeah.

Carolina: And it's all like about the aesthetic, which yeah, if you're a designer and you're working with like design stuff, of course that's your main priority, but not for me.

Gal: Like, yeah, you don't want to have to dig in like endless discussions in like some thread in a sticky note inside a design.

Carolina: Because you cannot create a table inside of that sticky note. I've tried.

Gal: Oh, no!
And I mean, that's not the end of the story. Once you have tracking, there is the question of how you're going to store it. Carolina, you have some opinions about that...

Carolina: Oh yeah, like in general, you know, if you're talking in general and you're giving like an intro to analytics or something, you say: Oh yeah, there's on premise, there is hybrid, there is cloud, but nowadays everything is cloud. And like, what I mean by those things like: on premise is like having things on your local computer. But yeah, but like macro level. A company that runs like an online business is going to need a lot of processors and also like a lot of like hard drives to keep all that information if they're tracking. So that would be on premise. And then pure cloud is like everything is there and the processing is there and it's all like virtual. It's virtual machines, virtual processors, virtual clusters, everything is done there, like pipelines. And like in my experience so far, like the switch has been like real fast to just doing everything like that, you know, on the cloud. And I think some things are not necessarily like needed like that, you know. They don't need all the ticks for which cloud is like better. It's like, oh, you know, available at the same time in different geographies. That's like an advantage of having stuff like on, on cloud and if different teams need to access it or like make it more secure. But things like, for example, the kind of like data that I work with that doesn't have any personal information, and it's only for like one team in one company, I don't know why we need to have stuff on cloud and pay a bunch of money for like front-end tracking.

Gal: Because what kind of thing do they charge you for when you have it on cloud?

Carolina: Like, I don't know, like the rates, but it's pretty expensive. And then I've had conversations with data engineers about creating a table with events from a function of an app that I work for. And so I need to create like a big table with events. And then there's like a line every time a person does anything on that part of the product. So there's a lot of rows. So it's a big table for every day for months in the back. Users only visit every few months or something. It's not a thing you log into every day. So they need to look back to see the performance of the thing. They said, like: Recreating the table going back, it was going to be like two thousand Euro.

Gal: Oh my God

Carolina: Like just that table.

Gal: That's wild. Would it be fair to say that it's kind of like the Airbnb of data where folks got lured in by simplicity and prices, only to find themselves locked in and the prices went up?

Carolina: Yeah, yeah, it kind of is. And then it drove everything up and now everything is expensive in comparison because like, they set up the prices and there's like four big companies that are in competition with each other. And yeah, they can just say like, oh, now processing is this much or your plan is this much. And I, I'm not saying like, oh, yeah, let's get rid of like, I don't know, cloud and whatnot. Like that's how the economy is set up basically. But I think, you know, like at a working level. At an operational level, there should be also like openness or more discussions of like, you know: Do we need everything to be part of the migration? Can we think of alternatives, especially if it's like analytics data that only like one team uses in one geography? I'm like, we should just have a hard drive at the office.

Gal: Yeah, you should be like able to maybe download that table once and then access it on premises.

Carolina: Exactly. Yeah, it should be like that. Yeah. It is… It is kind of like a scam.

Gal: Yeah. Basically you've given your entire data of your entire operation to someone.

Carolina: Exactly.

Gal: And now they're like holding you hostage.

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Carolina: Exactly. It could be over payment or like you're trying to, like, rework your contract. And also in terms of like the technology, like dependency, you know, like if you're building your whole thing on like Azure, now everyone gotta know Azure. And if you're going to do a migration, that's going to be like the biggest thing that's going to happen in like ten years.

Gal: Oh my God, yeah, I know: migration!

Carolina: And the thing is that you're only migrating, quote unquote, like you're not moving anything yourself. You're changing companies like, oh, we're moving from like AWS to the other one.

Gal: Yeah.

Carolina: Yeah. You need like so much orchestration, but it's just to make one private thing, system, work with the other and do the same thing they were doing before.

Gal: Yeah. Well, I guess they make it difficult for a reason. Exactly.

Carolina: And we're all just like, yeah, sure.

Gal: Okay, so now that we've ranted about infrastructure, we'll go on to talking about what we actually are meant to do with the data, but often can't. But this will be after the break.

We're back from the break. We told you about tracking user actions and storing the data. But all of this is for data-driven decision making.
There are all sorts of ways to make product decisions that are based on the data that tells us what users do on our product. One of the most important ones, in my opinion, anyway, is AB Testing, where you randomly divide your users into two groups, where one group is given a newer version of some part of the website or app, and the other still gets the old version. You then compare the performance of the two versions according to some metrics that you define in advance. For example, you may change the shape, color, or text of a button and check if more users click on it. Or you might add a pop up to encourage users to do an action and check if more users complete the action. As a precaution, you might also check whether more users left the website because the pop up annoyed them. Dividing your user base into two random groups and then serving each of them a different version of your product takes a certain programming effort that costs engineer hours. And these tests can run for weeks before you get statistically significant results, depending on how much traffic you have. But without running an AB Test, it's very hard to know how your users reacted to a change. Let's say you make a change to the product, and you want to avoid the cost of an AB Test. You might say: I'll just look at the way the metric changes after I release the new version. The thing is, many things can happen at the same time as releasing the new version. There might be something happening in the world that affects how users use your product, be it a tech scandal, Olympic Games, a pandemic or war. Your competitors might happen to release a new product or promotion at the same time. Another team in your own company might release other changes on other parts of the product, or the weather might change, causing users to spend more, or less, time on their phones. So you might see a change to your metric that has nothing to do with the change you made to the product. When you divide your user base into two random groups and release only one specific change to one of them, the sun is shining on both groups equally, and you can compare the way your metric performs in one group versus the other over the same time period.

Carolina: Yeah, I like what you said before that some product teams or companies just release things and like hope for the best or wish for the best.

Gal: Yeah.

Carolina: Because yeah, because I think, yeah, that kind of describes the, the scenario you mentioned here where they want to make changes and they have analytics at hand. There is tracking that can be implemented. That means you can do an AB Test and then you got like to convince, you know, stakeholders to do it or to do it for long enough, and then that it’s worth it. Yeah, I think that's really hard. And I think there's also like, kind of like the other side of it, of having, you know, a lot of like expectations, or point that they're expecting, you know, the data to get to at some point, instead of like try and do it. Like I know the place where I'm right now, I think we could be, you know, AB testing stuff. And they're like: Oh, no, we want to get to like the good point. We want to have like the new tracking and everything. It's like

Gal: Oh, like the data has to be perfect before you implement AB Testing.

Carolina: Yeah. And it's like: we're never gonna have everything like, you know, aligned, aligned, aligned because like, they're going to keep implementing changes in the product. Like we can’t mandate how the product is going to go just because how we want the data. That makes no sense. But I think something that is lacking in all of these scenarios is that people don't really want to sit down and just think about: What are we trying to prove? What are we trying to test? and How are we going to check for it? It's interesting that thinking: Oh yeah, we're going to find opportunities where we can improve, blah, blah, blah, and not looking at the current state of that part of the product or that feature, that metric is not even part of the plan.

Gal: Like they don't look at the product data from the feature before they decide to change the feature and how they're going to decide.

Carolina: Yeah, they don't think about it before they make it like a key result that they want.

Gal: Yeah.

Carolina: Like from the very minimum, I would say, requirement of knowing if enough people use it to merit changing it or improving it or whatever.

Gal: Yeah, I think like there's a lack of general understanding of what analytics even is and what the data can give you. And then what does it even mean to do an AB Test. I feel that in a lot of places where I worked, product analytics is kind of an afterthought to the product process. There's like something that they call “product trio”, composed of a product manager, a designer and an engineering manager, for example. 

Carolina: That's true. 

Gal: But where's the product analyst? They just sit amongst themselves without knowing what the users are doing, without knowing what the data is saying, and just deciding to do stuff. And then they just Slack you and tell you: Hey, can you AB test this? And it's like: What? What is it? What are we even talking about? Like: I've never heard of this feature until this moment!
I have endeavored in my career to like create workflows where like, I basically inserted myself into product teams as part of this process. And I told them I needed to be there from the very beginning because, first of all, just sitting in the meeting where they're deciding what to do (it's called discovery), and whenever they're like: Oh yeah, I wonder how many people click it? And I'm like in the background, like: Tick, tick, tick, tick.

Carolina: We could know, you know.

Gal: Finding out and then coming back and being like: Oh yeah, these many people use that. And then they're like: Oh, interesting. Then it changes their whole plan.
And then there is the thing about how to test something. So like, for example, if you change too many things at the same time, it's very hard to get any information from an AB Test. Let's imagine that you have a form and you change the order of the question, the way they are worded and the color of the text all at the same time, because you want it to look better, you want it to be more accessible, you want it to be more efficient or whatever, but you want all these things at the same time. And then you give half your population the new form and half the population the old form, and you get some kind of result out of the test. But you don't know if this result is because you changed the order, because you changed the wording, or because you changed the color, and now you'll never know it anymore. And so like, if you don't include a product analyst in this process of deciding how to change the form, it's going to be pretty limited what this product analyst can do later with the test. And like if the product analyst is there, then like they can tell you: Hey, actually we should do three different tests here. Or you can also do an A, B, C, D test where you have like one version with a new order, one version with a new order and the new wording and so on.

Carolina: Exactly. Yeah. You need to be able to attribute whatever change to a specific cause.

Gal: Yeah. You just test the reaction to whatever you're giving them. And then you can't really tell what it was. And this is something they don't understand.
And product managers are the ones who get you into this bind. But normally, at least the product managers I worked with, most of them, let's say, I don't know, eighty to ninety percent of them are open to this feedback and open to changing the workflows in a way that includes analytics from the start and that takes these things into account. Sometimes you'll get some pushback, sometimes they'll like argue with you. And of course, occasionally there'll be a douchey product manager that just doesn't want to hear anything that *he* didn't think about in advance.

Carolina: Or can like attribute to himself.

Gal: Exactly. But I mean, normally it's pretty okay, but it gets worse when you have to deal with like middle and senior management.

Carolina: Oh, yeah.

Gal: Because like very often you will get stuff like the CPO or CEO or whoever, and sometimes even the data lead themself, who kind of want you to do weird shit, like follow a metric and see if it changes. And then they like give it a fancy name to make it sound legit. Like they call it pre-post analysis. And it's like kind of: You're just telling me to look at how the metric is doing after I release the change, which is what we explained at length earlier why it's completely not a valid approach.
You know what, I respect it if someone says: I don't have the resources to look at the data. I'll just release stuff and hope for the best. But if they like tell me: Please analyze this and tell me from an analytical point of view, what is the result of releasing this change, and then they tell me: But do it with a pre-post analysis. I'm like: I can't, it's not a thing!

Carolina: You can't really.

Gal: And then also another thing that I really, really like when they say, joke joke sarcasm: Okay, this test has been running for really long.
So like something I should probably clarify is that in order to get statistically significant results of a test, you have to have a certain sample size. So what does it even mean? Let's imagine that I have two groups of ten people, and I give each of them a version of a button. And I want to see how many people out of the group click the button. If, I don't know, someone in the other group happened to have a headache that day, then maybe in one group five people will click the button and in the other six people, and that will be like a twenty percent, or ten percent points, difference between these groups. But it's just because someone had a headache. Okay. So like if you have a very small group of people you test whatever you changed on, you're very likely to get some results that aren't actually true, but they're just kind of noise. And in order to know to a certain degree of certainty, which the common one would be: one out of twenty such tests will be an error, or your accuracy is ninety five percent, then you just have to have a pretty big group of users seeing this stuff.

Carolina: Exactly, like you need to have enough people to test your button where at least one, or minimum, having like a headache or a broken finger that wouldn't let him press the button, wouldn't, you know, move the needle enough that you're gonna make the wrong decision. That's yeah, you need to have enough, you know, for a sample. So now we know that ten is not enough. And yeah. And it's, it's, it's hard to explain.

Gal: It's hard to explain. And then it also takes a really long time because sometimes you don't have a lot of traffic. I worked at a project where we had millions of users a day, and that was amazing because I could just test for one week on one percent of the users and get amazingly statistically significant results. And I worked with products where you had hundreds of users every week, and then you might have to wait a month or even two. And then some big shot from the C-suite comes to you and tells you, so give me statistically insignificant results. And I'm like, you can just go and toss a coin yourself and tell yourself: This is the result. Like, you hired me to give you mathematically relevant results, like, analytics. That actually means something. You're paying me a lot of money to do that. And now you're asking me to just guess like, I don’t know what you want from me! I don't know, I guess some people have this capability of like some CEO or CPO is coming to them and is like: Give me the result now! And then they just say something, I can't do it. I'm like, I have, you know, my professional integrity. I can't tell a lie. I don't know, but, I mean, yeah, maybe it's a bit of a top down versus bottom up processing situation. Like we come from this autistic mindset where we're like, okay, let's look at all the information and then build our understanding of the situation. And they come from like, these are all the beliefs I have, and let's just implement them without looking at the data.

Carolina: And I'm like: No, that's so much work! You know what, I love parameters. That's my favorite thing for everything. You know, like socially, work-ly, anything just to know, you know, like: What's the max and minimum the temperature is going to be that day, so I know how to dress. Yeah. Like, yeah, it's just easier. Yeah. I don't know if it's good or something because it can also become like the behavior of like taking too much on yourself, you know, mhm, like responsibility or work and then maybe work that is not even necessary or something because of, you know, you want to do it right for your principles. So yeah, I'm trying to find that balance and also not kind of like catastrophize because like, you know, I'm a very like literal thinker. So they were saying: We're going to do this project. And I was like: Oh my God, it's going to be a whole thing. It's going to be so much work. And now we have to do discovery and this and that. And we had the workshop, but we haven't met since. Yeah, there's no follow up. And I keep forgetting that, you know, and then I'm worrying because…

Gal: Like, you know, what I would do? I would dig my own grave by being the follow up.

Carolina: Yeah, I'm, I'm trying to shut up because…

Gal: It's so hard to shut up.

Carolina: Yeah. Like trying to hold back a little bit on the proactive part of me during these times kind of helps you just, you have your contribution to make. So yeah, I'm going to help from that direction. I'm trying to do like that part now. Yeah.

Gal: And what about all those AI features for the users? Because like, I remember when AI was really just beginning and I was still in this field. They kept bringing out all sorts of like AI features that no one wanted. And everyone was like, oh, this is so cool. This is AI. Everyone wants AI. Now we have to have AI in our product, even if it's not a product that lends itself easily to AI, or even if you don't have the capabilities in the team to build the AI that the users actually want. And then they just also say, this is a strategic bet. We're not going to AB test it because we need to have AI. So it doesn't matter if the users are using it or not. And then if you do end up doing a test, no one is using it. They put so much effort into creating it and no one is using it. And then because they put so much effort into it, they just keep it there, even though the users aren't using it. It's like the sunk cost fallacy galore.

Carolina: Exactly. Yeah. Like buggy before horse and sunk cost fallacy is like the two banes of my existence in the tech world. There's always this pressure to be like, oh yeah, we got to do the next thing and blah, blah, blah. And yeah, sometimes they hold on too hard and then, you know, implement tools that nobody really wants and spend money on that. And then they're like, oh, no, we can't give you like raises we just bought copilot for everybody. Visibility is very important in the business. So everything you're doing, you're gonna hype and you can't drop it when you hyped it so much.

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Gal: Yeah, there's that too.

Carolina: Exactly. So then they're not going to say, oh yeah, we messed it up. Or probably they're going to wait too long, you know? So you're spending time paying for a tool for the employees that we don't really use or doesn't really meet our needs, but it's like the new thing, it has AI or something. So now everybody has to use it. Or like something common for analysts, it's like the visualization tool, like we don't get to pick it.

Gal: Oh my God, I have to rant a bit

Carolina: Yeah

Gal: right here about the visualization tool. It's very common. Everyone uses it.

Carolina: Drag it!

Gal: I feel I should probably not say its name 

Carolina: Exactly, just say “that one”.

Gal: because I don't want to get sued. It's a very common data visualization tool that is supposed to be drag and drop. And so like the idea is that you have a table and maybe another table and you, or like a column in a table, and just drag and drop it. And then you magically get, you know, like some chart or some other table. And you do get a chart or some other table! But then if you like, try to calculate the same thing that you were trying to do by hand just to make sure, because you should do that, you didn't actually get what you thought you were going to get. And then it turns out you have to learn a whole programming language just to write the equations, so to speak, to give you the result that you want. But it's also a proprietary coding language, and so it's not useful for you. And even when you do learn how to do this programming, invariably it's not going to give you what you thought it would give you. And there's a whole entire community of people who use these products that post questions to each other: I did that, why did I get that? How do I get this? Why did I do..? And like, have to like, really like send each other files with their calculations to, like, help each other. And then there are like the kind of the main honchos of this, like it's.

Carolina: Like Reddit, but just for like that visualization.

Gal: Exactly. And then they're like: Yeah, of course, you forgot to do this and that. And it's like, why did I have to do that?

Carolina: Exactly. That didn't make sense to begin with.

Gal: It's so terrible. And like, I actually, at some point I realized I spent so much time on this. You know, back and forth and trying to figure it out and getting the wrong numbers and all that. I realized that it would take me less time to learn Python from scratch. 

Carolina: It’s more useful, yeah

Gal: Exactly. And it's like a more general thing. You can use it everywhere. You can use it for all sorts of things. And it took me less time to learn this whole programming language, Python from scratch, just to create a dashboard, one dashboard, than creating this one dashboard on that fancy data visualization software that everyone has.

Carolina: Exactly, the quote unquote, drag and drop.

Gal: Drag and drop dead.

Carolina: Exactly. That's so good. The thing is that it's not just that it's a black box and it doesn't really let you see how it calculated the thing. You know, like at your home growing up, you had this old, I dunno, radio or like washing machine or something, that is like, it's about to die, but we can't replace it. So to wash clothes, yeah, we had that in my house, we had to fill it with a hose. And then, you know, you got to do all these special things like, oh, no, like this doesn't work. So we gotta, you know, put like broomstick here and blah, blah, blah. All things that are technically unnecessary in the action of washing clothes, but because you have this garbage washing machine, you have to do all these extra things to get sort of the same result.

Gal: It's such a great analogy to that thing.

Carolina: Yeah.

Gal: And then there's the question of the products themselves. When you're working in tech, sometimes you're working on a product that nobody needs. You work on a product that like, for example, has its biggest sale push in the beginning of the year, where people make their New Year's resolutions, for example, like a gym or something, where you sell everyone subscriptions to the gym in January because they're sure they're going to go to the gym now. And then they never go to the gym. So like, there are products like that.

Carolina: And you're counting on that. That's part of your strategy.

Gal: Exactly. And then like, you kind of spend the whole year trying to make this product more attractive or more useful or whatever for people who actually buy it to not use it. At least this kind of thing maybe has some use to the couple of people who actually stick with it. And then like you have other stuff, which is just like selling you stuff you don't need and just destroy the planet or tempting you into betting and gaming expenses. And like, you can work on such bullshit products that then turn your job into a bullshit job because while your job might be important for the product. The product itself isn't important. So like that makes it even worse somehow.

Carolina: Yeah it does. That's why, I don't know, I don't enjoy if the product of the company you're part of, like the main thing is like, you know, acquisition of like new users and stuff because yeah, that's going to be very driven in that direction. Like the example of the gym. This just convinced them enough to get them in. And if they have a good time, bad time, nobody cares. And then that type of business also, I feel, places like kind of less importance on like the product experience, you know, because you just want to trap them like subscription based things that are not like a necessity. Yeah, it feels kind of like pointless sometimes. Your work, something that helps me is just working on maybe a product that is like useful or needed, you know, like the app for like your electric bill. That sounds good. Like that would be good for me because it's kind of neutral, you know, people have to use it anyway. Yeah, okay. They have to choose what company. They choose yours. You give a good service, but it's not like you got to get them. You know, like a game or, you know, other types of app. That makes a big difference to me.

Gal: Yes. Like I kind of have this dream of working in something that makes total sense. Like, I don't know, selling food or something, like something people actually need. Yeah. I think the electric bill thing makes sense. Banking. I don't know, I'm not thrilled about working for a bank, but at least people actually do need that.

Carolina: Yeah, in the sense at least of like, yeah, the digital product that I'm working on. It's something that people are probably gonna use either way, be it the one I work for or another one. Not, you know, I necessarily like the values of banks themselves and how they behave, but at least in terms of, yeah, we're trying to get people to use this app because they kind of have to use it anyway. And so we're making it the best possible. Instead of like, you know, trying to convince people that they really want to use this and get this, you know, pay for this, it's harder for me to like work with that kind of thing. Like for a game app or something, because I wouldn't take it seriously, because it's not like, yeah, it's serious because I gotta pay rent. But then beyond that, it's not even serious because it's like: y'all are just pushing ads and stuff. So like you're just trying to get kids to gamble. Like, why do I care? This is not a hospital. Like, I feel like I gotta have some grounding. That's also why I like product.

Gal: Yeah. Well, I mean: a) I wouldn't work for a gaming app, and b) I would take it seriously no matter what it is. I think that's one of my autistic challenges.

Carolina: Yeah. Like I would too. It's just. Yeah. But like the dissonance would mess me up. That's the thing. Yeah, it has before, like, having to take it like so serious, like: oh, no, this release and blah blah blah. Or, for example, when they have those expectations that you have all the answers, all the insights automatically or without a proper process being like: Oh, we need to know who are our power players or something, you know, and do like a regression to see how long they're going to stay in the game. I don't know, something that only half makes sense, but sounds like something they would request. So I'm stressing about how am I going to get this done because I don't have like the resources, but it's also for like a game that is not like educational or nothing. It's probably one of the eight million candy crushes or like that lady with, you know, like the broken house and the snow coming in. One of the copies, not even the original. And so like that dissonance of like: We don't work at a hospital, Julian! Don't be like: Oh, if we don't find out who's the power player, everything's going to burn down. Like, don't act like that. So yeah, like that thing messes with me. and I think it's part of Neurodivergence.

Gal: Yeah, well, I guess, I mean, it is important for the people who make money out of the power players, right? Their house will burn because they bought a house they couldn't afford, and now they have to make a lot of money out of in-app purchases or whatever. And you're there to like, line their pockets.

Carolina: Exactly. But I'm saying like in the context where, yeah, they want to know who the power players are and they come with like: We just define power players as like the longest sessions, for example, and then they come to you with like a nonsense request that it's really gonna make it harder for you to do the job. And then it's also for like a weird game. That would be too much.

Gal: Yeah. And I mean, there are the nonsense requests and then there are the requests that just change every year. Like talking about bane of my existence. This was my bane of my existence. Like there is something called OKRs.

Carolina: Oh my God. 

Gal: Which, right? Which is like: The O stands for objective, which is like generally what we're trying to achieve. For example, we want users to develop a habit using our app, for good or bad reasons. And the KRs means like: How are we going to measure whether they're going in the right direction? For example: Are they coming back every week? Are they spending ten minutes a day, you know, this kind of thing? And the thing is that, okay, very well, there is some strategy. There is a CEO, there's like the whole C-suite or… deciding where this product is going, what is our objective and how we want to measure them. Great. That happens in the beginning of the year. And then, you know, they tell you what these metrics are that you have to focus on, and then you realize the tracking is missing. You implement the tracking. You start thinking how you're going to measure it. You start creating the calculations, the queries, all the stuff you need. You create the tables. You start building the dashboards. The product teams are starting to build stuff that is going to bring you towards this objective and towards increasing these metrics, and they start implementing and testing, and you're starting to do AB Tests with these things. And then the year ends and you have your initial results from trying to direct your product in that direction that this objective was set for. And then they just go and change the objective! They just, the stakeholders have a meeting, or the C-suite is having a meeting and they kind of strategize and go on a retreat or God knows what

Carolina: Had an offsite.

Gal: An offsite retreat.

Carolina: Took a bunch of pictures, paid some like, American like with a beard that does improv, to like do a workshop of like improv for strategic wins or something.

Gal: Exactly.

Carolina: Pay him your whole salary.

Gal: Drank too much, didn't sleep at night. The next day got up and then they were like: Okay, this is our new objective and these are the metrics. And then they come back to you. And then you just basically have to take all the work that you did through the year working towards that objective that was so important a year ago, and just throw it in the trash, because now there's a new objective and there are new metrics to measure it. And now you have to start all over again. And this really messes with my expectation sensitivity, with my need to know what's going to happen, with my need to plan, and also with my kind of need to go deep into stuff because like, actually sometimes some of these objectives are actually good and interesting.

Carolina: When you like one and they change it. It's like, oh, come on.

Gal: True!

Carolina: It's like when you're like, oh, this kind of makes sense. And they're like, no, we're not doing anymore, it’s like: Oh, shit!

Gal: Exactly. And like, how dare they? This was a good objective. And now we're just like, and we got interesting results. And I got excited about it and I wanted to get deeper into it. And then they're like, no, no, let's get AI.

Carolina: Exactly. AI: one OKR, the whole OKR is AI.

Both: Yeah. Yeah.

Gal: Like and like the feeling for me, I have also a metaphor. It's not with a horse, but it's also with a means of transportation and some animals. So bear with me. So my metaphor is: It's like a big ship, like a cruiseliner or one of those cargo ships. It's like a huge ship. It has a lot of staff and the staff is great. Like everyone you're working with in the trenches or in the, you know, lower decks, are great, like the Mechanics, the engineers, the cooks. In the case of the tech company, the product managers, the developers, the other analysts, the designers, everyone is awesome. But unfortunately, this ship is being navigated by a bunch of drunk monkeys who have taken over the bridge. So they just kind of change course randomly and you're like, just trying to hold on to dear life down there, and just deal with these frequent changes and still run the ship so you don't like drown. And that's what working in tech feels like.

I'm going to take a minute of your time to remind you about prepped.to, a website where you can find and upload sensory information and service instructions for all sorts of places, so folks can prepare and script before going there. prepped.to is totally free without any membership fees or premium tiers. The web address is prepped.to . prepped.to is only as useful as the locations that autistic folks like you and me upload. You can upload as little as one line of text or as much as a whole essay accompanied by images, a video tour and a sound sample, all depending on the info and spoons available to you. Another way you can help keep the lights on at prepped.to is by donating as little as one euro a month, or by shopping at our print on demand shop where all the designs are #ActuallyAutistic. prepped.to - Know before you get there!

So one last question: Is there something actually worse than product analytics?

Carolina: Oh, let me tell you something that is way worse. I'll never do that. It’s being like a marketing analyst.

Gal: A marketing analyst.

Carolina: Marketing analyst, because it's all the things that we have been complaining about. But just like, you know, the way we complained about them was like putting them in a shelf. And then being like a marketing analyst is having all those same problems, but you just like took an axe, chop the shelf and everything is in pieces and on the floor. And then they tell you you gotta pick random pieces like a piece of wood and a piece of book. And then that's a new book and they're like: This is a book, put it back in the shelf. And I'm like, how?

Gal: But why, why, why is it like that? I actually didn't work in that.

Carolina: Because there's a lot of stuff about attribution. 

Gal: What's attribution? 

Carolina: Like attributing the cause of an action that's outside of your visibility to one of like the pre-established like categories that they have in like the marketing analytics: If it's online, if it's an email, if it came organic, quote unquote, that would mean if someone Googles electric bill app and they click on it and then they're like, oh, I'm going to sign up because like, it looks like it's what I want. That would be like an organic subscriber or lead.

And everything in marketing analytics is like in terms of leads and like a lead is anything that can become a conversion.

Gal: A sale?

Carolina: A sale. Yeah. If you're selling things, yeah, a sale. If you want them to do five minutes with your app every day. You know, the first time they do that or something like that. But the way that they say what costs a lead and how many people or how many actions equate one lead follows no logic. So they can say that: Uh, we had a campaign for Facebook and this user probably came from Facebook, even though this user came from Google. But at the same time, we had a campaign on Facebook and they probably came from Facebook. So we're gonna attribute the same user. We can only make one sale out of that user to both those categories. And that makes no sense.

Gal: Yeah. So like basically attribution is to figure out where the user came from to your product.

Carolina: Yeah. Out of all the different, you know, channels or means that you're doing marketing.

Gal: Yeah. And then it's very hard because one user can be exposed to more than one channel. And also you don't really control the tracking, right?

Carolina: Not for, for marketing, not anything that happens outside. You're dependent on like the logic and the software of like a third party.

Gal: Of the platform where it was.

Carolina: Exactly. And it's probably, you know, like, like Google ads, Google Analytics, that's the main thing. And it's, it's also like a black box. Yeah. Like online marketing, the way I understand it on the side of like the marketers, it's like, yeah, you're going to put a bunch of money, like a bunch of money. Also, that is so much money, so much visibility that there's a lot of pressure in the like weird numbers that you don't understand that you have to report on because it's like fifty thousand dollars or something that you see in like the counter for like, some like Facebook campaign that I don't even know what it is, you know? But it's, it's big numbers. It's very expensive. And so they're just seeing how many clicks something generated according to Google ads, how many conversions and blah, blah. But all of those like what a click is, what a conversion is, is already predefined.

Gal: Okay. So like, unlike the situation where you design the tracking and you have trouble documenting it and people following it and implementing it, in this case, like you don't design it and you don't control it and you don't know what it means exactly. And then like, so basically, like you need to be a good bullshitter for working in this.

Carolina: Definitely. Yeah. Because you need to tell them like, oh, yeah, this thing you put 50k in was the best thing ever.

Gal: So yeah, not for autistics.

Carolina: Oh no, no, no, that, that broke me. Like I was like: What do you mean you're gonna count one person twice? Because they were like: Oh, yeah, we're gonna attribute this lead also to Facebook because we put a lot of money into a Facebook campaign. So yeah, they probably saw it. And I was like, but that's one person! And just to put into context, the job that I was doing, this ad was like a real-estate thing. So it is kind of like one person, one sale, you know, because it's full on houses. Yeah. Like if it's like a t-shirt shop or something, oh yeah, we can, maybe they bought ten t-shirts, you know, we can spread the attributions. But no, one lead can buy one house. And also sometimes you don't, you don't have like the visibility of whether they actually were exposed to like that campaign or something. It's just an assumption. A lot of assumptions.

Gal: Okay.

Carolina: Yeah.

Gal: I mean, if you want to hear more about assumptions in places you don't expect, such as in exact sciences, there is also an episode about that. But I don't know if I'm glad to hear there's something worse than product analytics, but at least it's nice to know that it's good in comparison to some things.

Carolina: Exactly. Yeah. To end on a positive note. Also, what's good, at least for me about working like product analytics, it's coming back to like that, you know, there's a way of having like a foot on the ground in the sense of you can only count, you know, one person clicking the button once. And then I like that, that makes it like more solid in terms of making, making sense for me. And then it's about people, you know, people doing things. At the end of the day, we're counting people. That's kind of fun.

Gal: Yeah, it's fun seeing what makes them tick and also making the product better for them. And I think on this note, we're going to wrap up. Thank you so much for being here, Carolina.

Carolina: Thank you. Super fun.

Gal: Super fun. It was fun working with you. And now it has been fun recording with you. 

And thank you to our listeners for listening to all this tech babble. I'm Dr. Gal Schkolnik, pronouns: They/Them, and I was joined today by Carolina, pronouns: She/They. You can also find Carolina on Instagram @millennialspinster. Please find the link in the show notes. 

This episode was produced and edited by yours truly. Theme music by Lir Lutau Shahar. Lir is a composer and sound designer who loves to make whimsical and magical music. Listen to more of seas stuff at @lir_lurim on YouTube or SoundCloud. For collaborations, see contact in the show notes.

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Rey: I actually don't mind podcast trailers, but I hate the fake happy music that is often used in them.

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Gal: Being autistic in a holistic world can have its moments of awe and wonder, but it can also have a lot of moments of just UGH. I'm At2Aut founder Dr. Gal Schkolnik, pronouns: they/them, host of the new podcast The Autistic Rant Hour on the Autistic Culture Podcast Network. And my little rant right now is about podcast trailers! They tend to start off with some discordant music that has nothing to do with the podcast itself, followed by either a breathlessly excited announcement or worse, snippets from the podcast, disembodied sentences that just jump at me with no warning and no explanation. In my podcast, The Autistic Rant Hour, I spent an hour ranting and infodumping on my own and with guests about the aggravating, the inexplicable, the unjust, and the infuriating, in all fields of life, one episode at a time. So for this trailer, I wanted to ask my guests how they felt about podcast trailers. You've already heard the opinion of Ray Rissanen about trailer music. How about you, Dr. Mary Sims? How do you feel about podcast trailers?

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Mary: Well, Gal, you know that I'm a stickler for accuracy. So when a podcast trailer comes on, my first reaction is fight or flight to protect my sensory avoidant self. This means my stomach tightens and I get very alert.

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Gal: Oh yeah, I totally know the feeling. I rarely even manage to survive the couple of minutes they take. So dear listener, you can totally skip this trailer altogether and just tune in to the real thing.

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Mary: The next thing that happens is that my autonomy drive kicks in and I start scanning the message for any hint of a demand being made on my time, energy or attention. I usually just can't wait until the podcast trailer is over. But if the message is clear, useful, and sincere, then I get this nice little dopamine rush.

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Gal: Okay, so they can also be done well, it seems. Carolina, what do you think?

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Carolina: What I like in a podcast trailer is like to hear who's going to be part of it and then hear why they're like excited about it. I don't need to hear, you know: Oh, it's so and so from this other podcast and creator of this and that, you know, I want to know what you're doing now and why you like it.

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Gal: Okay. So let me tell you what you can expect from this podcast's first season. I will talk about product analytics and being autistic in tech with my ex-colleague, Carolina, tell you about the bureaucratic nightmare of founding my nonprofit Aut2Aut, discuss medical gaslighting with disability activist Simo_tier, and mental health services with artist Ray Rissanen. With neurologist Dr. Mary Sims, we'll ask ourselves: Exact sciences, are they? And the last episode will be about accessibility across disabilities with allistic but disabled activist and filmmaker Tal(y) Wozner. Tal(y), what do you think about podcast trailers?

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Tal(y): I actually like trailers. It's cool that I get a chance to hear somebody's voice and see if it's annoying. And also, I don't know, get kind of a feel of what I'm looking at.

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Gal: Okay, so if you didn't find our voices annoying and maybe even enjoyed this little rant about podcast trailers, tune in to the Autistic Rant Hour on the Autistic Culture Podcast Network starting June 22, or wait for July 23 to binge it all in one go. 

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