PMDD and Autism Connection: Why It Affects 92% of Us

If you've ever felt like your premenstrual symptoms were more intense than what others describe, you're not alone – especially if you're autistic. While PMDD affects only 2-8% of the general population, research shows it impacts a staggering 92% of autistic individuals. As someone who has navigated both PMDD and eating disorder recovery, I've spent years researching and understanding this connection. In this comprehensive guide, I'll share both the science behind this phenomenon and my personal experience, helping you understand why your experiences are valid and backed by research.

Before we dive into PMDD and its connection to autism, it's important to understand the foundation: your menstrual cycle. Many of us learn about periods in basic terms, but understanding the complex hormonal dance that happens throughout your cycle can help explain why PMDD symptoms occur when they do, and why they might be more intense for autistic individuals. Let's break down the four key phases that create this monthly cycle.

Understanding Your Menstrual Cycle: The Four Phases

Follicular phase (7–10 days): The hypothalamus (which is a small neuroendocrine structure situated just above your brain stem) produces gonadotropin-releasing hormone (GnRH), which stimulates the pituitary gland (situated right beneath the hypothalamus) to produce and release follicle-stimulating hormone (FSH) and luteinizing hormone (LH). FSH and LH travel through the bloodstream to the ovaries, where they stimulate the growth and maturation of follicles (sacs that contain eggs). As the follicles mature, they begin to produce estrogen, a hormone that plays a key role in regulating the menstrual cycle.

Ovulatory phase (3–4 days): The increased estrogen levels trigger a sharp rise in luteinizing hormone from the pituitary gland, causing the release of a mature egg from a dominant follicle (ovulation).

Luteal phase (10–14 days): After ovulation, the remaining follicle cells form the corpus luteum. Along with estrogen, the corpus luteum produces progesterone, a hormone that prepares the uterus for possible pregnancy.

Menstrual phase (3–7 days): If pregnancy does not occur, the corpus luteum degenerates, and estrogen and progesterone levels drop. This drop in hormone levels causes the uterine lining to shed, resulting in menstruation.

Now that you have a basic overview of the menstrual cycle, time to dive into PMDD!

What is PMDD?

PMDD stands for premenstrual dysphoric disorder and is considered to be a much more severe form of premenstrual syndrome. Individuals with PMDD may experience a wide range of symptoms during the luteal phase of their cycle. These symptoms are similar to the mood swings, fatigue, difficulty sleeping, changes in appetite, and digestive issues commonly seen in PMS but, you guessed it, are much more extreme. In fact, unlike PMS, PMDD is an official disorder in the DSM-5 categorized under “depressive disorders.” To meet the criteria for PMDD, you must experience a total of five specific symptoms, at least one of which must be from the following group:

• feeling very irritable or angry
• feeling very down or depressed
• feeling very anxious, stressed, or tense
• avoiding your usual activities

Any one (or more) of these additional symptoms must be present (for a combined total of five symptoms) to confirm PMDD:

• difficulty concentrating
• feeling tired and very low in energy level
• binge eating or having really strong specific food cravings
• sleeping too much or having trouble falling asleep
• feeling overwhelmed or out of control
• unpleasant physical symptoms, especially breast tenderness, bloating, body aches, and weight gain

In order to be diagnosed with PMDD, symptoms must be present only in the week or two before your period, and they must subside within a few days of starting your period as quickly as they come on (1). This is a critical note, as the listed symptoms are also seen in other circumstances, including eating disorder recovery.

My Experience with PMDD as an Autistic Female

For years, I experienced symptoms that went far beyond typical PMS, but I didn't understand what was happening. In the week leading up to my period, I would be hit with an overwhelming combination of symptoms: heightened depression, anxiety, heart palpitations, insomnia, an inability to concentrate, binge eating, and dissociation. Because these symptoms coincided with my luteal phase, I initially chalked it all up to "really bad PMS." Every month was riddled with fear and resistance towards that one inevitable week before my period, and all I could do was give myself a ton of rest and basically fall off the face of the Earth for a few days.

The experience is particularly intense during my luteal phase, when there are always a few days where I seem to completely blank out. It can be quite scary, as the numbness can overtake me from one moment to the next, rendering me incapable of engaging in activities I usually love doing. The exhaustion is overwhelming – and I'm not the only one. One of my clients told me that she sleeps a whopping eighteen hours each night for two to three days during her luteal phase each month!

I have a really close relationship with my mom, and I remember calling her once, in tears, saying, "It feels like I have bipolar." Although I hesitate to share that sentence because my very last intention is to minimize the experience of people who actually have bipolar disorder (just like how people without obsessive-compulsive disorder minimize the disorder by saying "I'm so OCD" to describe their desire for order), I choose to share it with this acknowledgment because I know I'm not alone.

The most challenging aspect is the complete disconnection from myself. This isn't just feeling "off" or experiencing the temporary disconnectedness we all have sometimes. When I'm about to get my period, it resembles total dissociation. It's hard to describe precisely, as I don't exactly feel present in those moments, but my best attempt at explaining the experience is this: I am aware of my body and know that I'm alive on Earth, but my brain feels like a cloud that is incapable of thinking creatively. On top of this, feelings of euphoria can turn into depression in the blink of an eye, and the week is often filled with insatiable hunger that tends to shut off as soon as I start to bleed.

What Causes PMDD?

The exact causes of PMDD are unknown, and there is unfortunately quite a lack of research on the subject. However, there are various explanations for why someone may experience PMDD, including genetics, trauma, and hormonal and sensory sensitivities.

Genetics: Based on family studies, twin studies, and genetic studies, PMDD is thought to have a heritability range of 30%–80% (2). Researchers have found associated variations of specific estrogen and serotonin receptor genes in individuals with PMDD compared to control subjects (3). These findings establish a biological basis for PMDD, validating the experience of PMDD warriors and therefore paving the path to appropriate management of the disorder.

Trauma: Significant stress and trauma exposure have been associated with PMDD (4). There are several explanations for this risk factor in and of itself, one being the tightly linked HPG and HPA axes. Furthermore, patients with a genetic predisposition for PMDD may be more vulnerable to develop PTSD in the first place due to a heightened trauma response.

Sensitivities: While I researched PMDD, the topic of hormonal and sensory sensitivities naturally intrigued me due to the associations with neurodiversity. In fact, the presence of a neurodivergent brain could rule out the need to search for different causes of PMDD altogether, considering neurodivergence is genetic and neurodivergent people are more likely to experience abuse. Furthermore, it is well established that neurodivergent individuals process sensory stimuli differently – including hormonal stimuli. That being said, let’s give neurodiversity the spotlight it deserves and delve into just why neurodivergent individuals are more likely to experience PMDD.

PMDD in Autism and ADHD: The Scientific Connection

Among the population of individuals who menstruate, current estimates show a 20%–40% prevalence of PMS, while 2%–8% experience PMDD (5). When it comes to statistics, many people without access to healthcare are not included. Therefore, it’s important to take these numbers with a large grain of salt and use them to get a general idea of the true statistics. The reason I choose to share these numbers here is because of their strong clash with the data found in the neurodivergent population. With the ongoing stigmas surrounding neurodiversity and the massive underrecognition, invalidation, and misdiagnosis of mental health conditions, it’s safe to say reliable studies on neurodiversity are few and far between. However, results from the studies that have been conducted show significant elevation of PMDD occurrence among the autistic and ADHD population.

One study from 2008 compared 26 women diagnosed with autism with 36 neurotypical control women. The results were quite astounding: 92% of the autistic women met the diagnostic criteria for PMDD, compared to a mere 11% in the control group (6). Another 2021 study assessing the prevalence of PMDD in those with ADHD recruited 209 ADHD women and 1,405 neurotypical controls to complete questionnaires measuring PMDD symptoms. The results indicated a 46% prevalence of PMDD in the ADHD’ers as compared to a 28% prevalence in the control group (7). The wide 11%–28% range of PMDD found in neurotypicals begs the question of how reliable the observed 92% and 46% prevalences of PMDD in autistic and ADHD people truly are – not to mention the fact that both studies did not include AFAB individuals who do not necessarily identify as women. Yet one conclusion can be drawn: autistic and ADHD people are much more likely to have PMDD. But why?

A Genetic Link Between Autism and PMDD

As previously established, genetics are a proven factor for both neurodivergence and PMDD. This led me to wonder whether the genes involved in PMDD are associated with autism and/or ADHD. While the genetic research on PMDD and neurodiversity (separately and together) is relatively new, emerging studies have confirmed alterations in the expression of estrogen and serotonin receptor genes (the same genes that have been associated with PMDD) in autistic individuals (8). Although the research on estrogen receptor genes in ADHD is limited, there seems to be a correlation between serotonin receptor genes and ADHD (9). Speaking of which, ADHD is often associated with the neurotransmitter dopamine. However, just like in autism, research has shown serotonin also plays a significant role.

An abundance of science shows that autistic individuals have altered levels of serotonin and dopamine in the brain (10). Whereas this fact is generally accepted within the autistic space, less is known about the role of serotonin in ADHD. Studies from animal models of ADHD indicate an intimate interplay between serotonergic and dopaminergic neurotransmission, meaning the root causes of ADHD may lie deeper than the common belief that someone with ADHD simply “lacks dopamine” (11). Because any type of neurodivergence – beyond just autism and ADHD – is genetic and expresses itself differently in each individual, it goes without saying that physiological underpinnings are infinitely variable. This genetic variance explains why not everyone who is neurodivergent has PMDD, develops an eating disorder, or becomes a victim of abuse. Overlapping scientific findings teach us a lot, but research can only be conducted based off what we already know…and as Aristotle famously wrote, “The more you know, you more you know you don’t know.”

While there’s a lot we don’t know, new research is thankfully emerging every day. One study found that individuals with PMDD have an alteration in a specific gene complex that regulates cellular response to estrogen and progesterone (12). In simple terms, there is genetic evidence for why people with PMDD have an increased sensitivity to their reproductive hormones during the luteal phase. When paired with knowledge of neurodiversity, this is a revolutionary finding! You may know that hormones are closely tied to neurotransmitters. This means that divergent reactions to reproductive hormones are directly linked to variations in brain chemicals and neurologic pathways that control your mood and support a sense of well-being. Because autistic and ADHD individuals already have unique levels of these neurotransmitters, we may be more sensitive to hormone fluctuations and, thus, the symptoms they bring about.

Understanding and Managing PMDD in Neurodivergent People

This heightened sensitivity to hormonal fluctuations in neurodivergent individuals has revolutionized our understanding of PMDD. What was once dismissed as "severe PMS" or "overreacting" now has clear biological underpinnings, especially in autistic and ADHD individuals. The research validates what many of us have experienced: our intense premenstrual symptoms are real, rooted in our unique neurobiology, and worthy of proper recognition and support.

If you're looking to better understand and manage these experiences, I delve deeper into the connection between hormones, neurodiversity, and recovery in my books. Rainbow Girl is a memoir of autism and anorexia, while How to Beat Extreme Hunger includes a comprehensive chapter on "Puberty, Periods, and PMDD" specifically focused on neurodivergent experiences of hormonal changes in ED recovery. While research in this field continues to evolve, understanding these biological connections can help us approach our experiences with greater compassion and develop more effective management strategies.

Remember, whether you're dealing with PMDD, autism, eating disorder recovery, or any combination of these, your experiences are valid and worthy of understanding and support. You're not alone and I would love to support you on your journey to making peace with your body. You can schedule a consultation call for 1-1 coaching here!

Sources:

1. American Psychiatric Association, “Premenstrual Dysphoric Disorder,” in Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (APA, 2022), 171.
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