Do 92% of Autistic People Who Menstruate Have PMDD?

let's talk about generalizability! PLUS: a brief cultural history of PMDD

Hello and welcome to this week’s edition of Tracking Down the Citations For Outlandish Psychology Statistics Found on Social Media. Instead of a round-up, we are doing a deep dive on a stat from TikTok that was dropped skeptically into the SlugChat discord by August, who asked if I could find where it came from:

92% of autistic people who menstruate have PMDD.

This claim appears to be spreading onto other feeds, which makes me wonder: are we watching a brand new zombie statistic¹ pull itself out of the dirt? Maybe! As far as I can tell, on TikTok at least, it kicked off with this video posted a week ago by user katastrophica:

@katastrophicagorgeously highly sensitive creatures #PMDD #pmddawareness #autism #femaleautism #healthcare #femalehealth #neurodivergent #statistics #ADHD #undiagnosed #funny #recovery

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“A statistic has just been released”² they say, with no source in sight, so I typed “92% autistic PMDD” into Google and, lo and behold, an ADDitude Mag article dated November 17th came up. Long-time slugscribers will be familiar with ADDitude, an ADHD trade journal that is the bane of my existence and truly the source of so much bad pop psychology on this, our beautiful/terrible internet.

The article itself is a basic WebMD-level post that describes what PMDD is, lists the diagnostic criteria, drops a few citations, and then suggests some treatments. Footnote #6 appears to be the source of the 92% stat — it’s from a 2008 paper called Prevalence of premenstrual syndrome in autism: a prospective observer-rated study.

It’s only 5 pages long, which I find weirdly short for a research paper, but here’s the gist: they rounded up 62 disabled cis women who lived in institutions or care homes in the south of England. 26 had both autism and other learning disability diagnoses (though the paper is vague about this), and the control group consisted of 36 cis women who had learning disability diagnoses only, but no autism.

Nursing staff observed the patients for three months and rated how much they thought things like mood, anger, and irritability were changing. If symptom severity increased equal to or greater than 30%, it counted toward “late luteal phase dysphoric disorder” (the old term for PMDD before the DSM-5).

The paper concludes:

This is the first systematic study of late luteal phase dysphoric disorder (premenstrual syndrome) in women with autism and has demonstrated that its prevalence in autism (92%) is significantly higher than in a matched control population (11%).

But remember, they weren’t comparing autistic women to “neurotypical women”, as this Reddit post on r/PMDD that also cites the study claims. They were comparing autistic people in care homes to other people in care homes with disabilities that are not autism, using only the opinions of nursing staff who observed them.

So maybe, in this very specific context, using this specific method, comparing these specific, small groups of people, they found that 92% of the autistic women had PMDD.

But you can’t generalize that to every autistic person in the world, and you certainly can’t take the results of this study and apply it to all people who menstruate, because the study itself was on cis women. While I, a genderweird, do appreciate the gesture, slapping ad hoc gender neutral language on gendered science does not make it actually inclusive.

I did a little digging to see if there was any other literature on PMDD and autism, and I came across a study from this year that found 14.3% of autistic women studied had PMDD compared to 9.5% of a non-autistic control group. Again, they’re looking at cis women — I couldn’t find anything about PMDD in trans or non-binary people besides a few trans healthcare websites and Reddit.³

Why do I keep harping on this distinction? Because how you experience gender affects how you experience menstruation. Some trans men and non-binary people experience extreme dysphoria around menstrual changes, while some don’t experience much pre-menstrual distress at all, and some transwomen report experiencing PMS symptoms every month.

PMS has also been referred to as a culture-bound syndrome. Studies have found that women in Hong Kong, Taiwan, and China get physical symptoms but rarely report negative emotional ones like women in the US, and the longer some women who immigrate to the States live there, the more likely they are to experience PMDD.

There have also been studies that show PMS can be affected by priming, as Sally King explains in Premenstrual Syndrome (PMS) and the Myth of the Irrational Female:

Research shows that experiences of PMS are highly susceptible to the ‘priming effect’ in which prior knowledge of what PMS is, and how it is viewed by wider society, plays a significant role in symptom perception... This creates an obvious problem for PMS tracking tools, which provide primes for such symptoms instead of open-ended symptom reporting.

There’s biology to premenstrual distress, sure. There’s biology to everything, but biology doesn’t exist separate from our cultural ideas about gender. Hormones do have very real effects on us, but they’re also socially modulated, as a favorite paper of mine from 2018 explains:

Indeed, some social neuroendocrine research has begun to examine how gendered experiences themselves might modulate hormones, with evidence suggesting that testosterone can respond to gender socialization and gender norms. Thus, hormone research is showing the ways that gendered expectations and lived experiences can actually shape the very hormones thought to underlie the essence of femaleness and maleness, again challenging basic tenets of the gender binary.

I found a chapter in a book on Critical Menstruation Studies that looked at what authors Jane M. Ussher and Janette Perz call “the monstrous feminine” — social attitudes about femininity that negatively influence how women experience their periods.

Fatphobia was rampant in the subjects they interviewed, who often said they “felt fat” around menstruation, which triggered a cascade of negative emotions and self-hatred. They were also concerned about the size of their breasts, which made them feel like they were being looked at and sexually objectified, and ideas about “raging hormones” made them afraid of being seen as animalistic, a sexist idea that goes all the way back to Ancient Greece, where the uterus was described as “an animal within an animal” that caused all kinds of pathology.

The authors write:

The unruly premenstrual body therefore stands as a double assault on femininity—abhorrent, animalistic, fat, and “taking up more space,” as well as out of control—the embodiment of the monstrous feminine. If women see themselves as uncontained and at the mercy of raging hormones or fatness, they position themselves as being attacked from within. The body becomes further objectified, alien to the woman, something that is acting against her.

That is a terrifying experience, but we have our culture to blame for fears of fatness and insanity, not our bodies. The authors also speculate that perhaps premenstrual distress could be a culturally acceptable way for women to express emotions that they otherwise have to keep bottled up.

In The Atlantic, researcher Dr. Sarah Romans explains:

There is a range of paradoxes -- world-turned-upside-down events -- like festivals, Mardi Gras, where people are socially prescribed to behave out of role. In Europe in medieval times there'd be one day a year where the lord would serve his own servants and workers, and then the rest of the time it's the other way, servant obeying the master. And these kinds of rituals serve to embed the normal behavior. I think PMS is a bit like that. 'We'll let you be cranky and bad-tempered now, but just for one or two days. The rest of the time you've got to be like a true woman.’

This doesn’t negate the very real physical experience people are having, but the experience of illness is always shaped by the culture it’s found in. Ussher and Perz write:

The women we interviewed all reported embodied change during the premenstrual phase of the cycle. However, these changes are not ‘pure,’ somehow beyond culture, beyond discourse. They are not simply caused by the reproductive body, by a syndrome called ‘PMS.’ And they are not inevitably experienced as distressing or problematic.

As a non-binary person who has never had a regular cycle, I mostly just forget that it happens until it happens, and then it hurts for a couple days, and I’m annoyed that I have to add yet another hygiene task to my already poor self-care routine.

Sometimes I get pre-menstrually hyped, as opposed to the depression other people experience. I call it having a “god day”, because I feel like a god, and it’s a pretty good sign my period is imminent, though it’s not always accurate. This anecdote doesn’t really prove anything, except that experiences of menstruation are complex and personal, and can’t be generalized based on a study of 26 people.

If you’re not familiar with the concept of generalizability in scientific studies, I found a great explanation by psychologist Eiko Fried:

No matter if you have training in statistics or not, you likely have built a pretty good statistical intuition by reading results of election polls. Suppose I want to know which of 2 parties will win the next election in the Netherlands, and to do so I carry out a poll with 37 participants. You would be very skeptical when I tell you that there is “clear evidence” that party 1 will win over party 2 from this small sample. Of course you would be more confident if out of 37 participants, every single one said “party 1” and nobody said “party 2”. But even in this case, the problem that remains is generalizability: who these 37 participants are.

Suppose I told you that I recruited the 37 participants as randomly as I could, by traveling the Netherlands for weeks and asking every 1000th person I encountered. You would have more confidence in my results than when I told you all 37 participants I asked were asked during a campaign event of party 1.

That’s the problem with the 92% study: the sample does not represent the general population of autistic people, just a small percent in a very specific context — in this case, hospitals and care homes in the south of England.

It also disregards the effects of such a context. Are there aspects of living in a care home and being monitored and managed by nurses that are distressing? How does the attitude of the observer, a worker who may be tired or agitated or annoyed themself, affect their ratings? How does one person — who, in this case, is in a position of power — look at another person and say, Ah yes, they seem to be 30% more agitated today than yesterday?

The relationship between a carer and a patient is subjective, and we don’t know anything about what these relationships or these autistic individuals’ internal worlds are like. Maybe they don’t even think of themselves as women. Nobody asked them!

I found a 2018 study that did ask autistic people about their experiences of menstruation, included an autistic author, and allowed respondents to identify as any gender. Participants noted that their sensory issues felt more intense around menstruation, that the pain could be extremely distracting, and that they became more prone to anxiety that led to overload and meltdowns. One respondent said:

“It can become much more overwhelming and harder to maintain control of the things that already take a lot of effort for us to keep on top of, during a period”

It makes complete sense that a change in the body which involves physical pain and discomfort that disrupts daily routines in uncontrollable ways would be very difficult for the vast majority of autistic people.

It also makes complete sense that this could be uncritically interpreted on social media as 92% of autistic people having some sort of mysterious hormonal abnormality, and it doesn’t surprise me that these sorts of impressive statistical claims go viral. Character limits and 3-minute videos force generalizations, and big numbers get big reactions.

Confirmation bias means you’re less likely to fact check a stat that reaffirms something you already think, which is clear in the TikTok above, when katastrophica says:

“I believe autistic people are made up of 92% sensitivity…

…we’re sensitive creatures, we feel everything.”

They view autistic people as “gorgeous highly sensitive creatures”, an idealistic vision that paints us as beautiful, delicate, magical beings. But we’re not biologically predisposed to be little manic pixie dream people — we’re just people, some of whom are actually hyposensitive, that is, far less sensitive to physical and emotional feelings than others.

Generalizing, even in a positive light, is still dehumanizing, because it denies a person their complexity, and I would be very careful using biology to justify difference and suffering — that hasn’t worked out so well for marginalized people in the past!

Where Did PMDD Come From, Anyway?

Because I am an absolute slut for historical context, I couldn’t write about this without looking into the history of PMDD, an interesting tale which includes murder, arson, and, of course, pharmaceutical giant Eli Lilly.