Autism, PMDD, and Extreme Hunger

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Raise your hand if you’ve heard of PMS before. Premenstrual Syndrome, or the shitty period before your period, is a common yet misunderstood experience in people who get periods. Thanks to my eating disorder, I didn’t get my first period until I was 18 years old. As I describe in my books Rainbow Girl and How to Beat Extreme Hunger, I had really mixed feelings about my menstruation. One of the reasons I missed my eating disorder was because I didn’t have to deal with the intense hormone and mood fluctuations that come with having a female physiology...but at the same time, I knew it was something I had to accept. The fact that my body was WORKING – even after everything I’d put it through – was truly a miracle! Experiencing extreme hunger was a miracle too, but at the time, it sure as hell didn’t feel like it.

Getting my period in eating disorder recovery

If you’ve read my memoir Rainbow Girl, you know I finally committed to full recovery in July 2017. I had been struggling with an eating disorder since I was 11 years old and I was at a point where I just could not keep on barely surviving. So I ate more. I rested. And I gained a LOT of weight super fast. I was deemed “weight restored” in October 2017. I got my first period in July 2018. This period after getting my period was a time in which I felt incredibly mixed about my forward path. Up until this day, I had used not having a period as my reason to eat more and rest. I had used not having a period as my permission slip to take all the recovery actions we’re told to take when we have an eating disorder. So when I eventually did get my period, I had an identity crisis. I thought I was now “perfectly healthy,” so I no longer needed to rest or needed the amount of food I had been eating.

Slowly, my ED creeped back in, and I would definitely say I was in a state of “quasi recovery.” I was eating healthy and exercising and doing all the things that a healthy person does, but there were still subtle ways in which I wasn’t giving myself the full permission I knew in my heart I needed to give myself if I was to live a life of freedom. Well, my body was keeping tabs on things! That’s what’s so amazing about our body: it’s always keeping a little record of your intake, your energy expenditure, your sleep, and everything else it needs to optimize survival. Why? So it can help you bounce back and return to its desired state of homeostasis if you’ve been deprived.

In October 2018, about 3 months after I got my first period and about 3 months after I started restricting again, I was hit by the extreme hunger bomb. Whereas I knew extreme hunger was a normal and healthy experience in recovery from a restrictive eating disorder, I believed my extreme hunger wasn’t valid. I believed my extreme hunger was “wrong” because I was already “weight restored” and heck, I even had a period! (If this is you, you’re definitely going to want to grab a copy of my book How to Beat Extreme Hunger because I explain precisely why extreme hunger does usually happen when you are already “weight restored."

While going through extreme hunger, I gained a lot more weight and went into weight overshoot. This was probably the hardest part of the entire recovery process because I felt like I had done recovery wrong and there was no going back. No matter how hard I tried, I literally could no not restrict without it being met by a more intense period of feast eating.

After yo-yoing more times than I care to admit, I realized there really was no more fighting my biology. I could either surrender to my body’s needs and choose to make peace with all that accompanied that, or I could keep fighting a fight that couldn’t be won. Well it’s obvious which choice I made, but that doesn’t mean the struggle was over. In fact, when my weight finally nestled within its set-point weight range and my periods started to normalize, a whole new struggle reared its head. I didn’t know it at the time, but this struggle, as I would learn much later, is called PMDD, which is short for Premenstrual Dysphoric Disorder.

Mysterious Period Symptoms: PMS or PMDD?

In the week leading up to my period, I would experience horrible symptoms including heightened depression, anxiety, heart palpitations, insomnia, an inability to concentrate, binge eating, and dissociation, all while feeling incredibly overwhelmed and exhausted. Because all of these symptoms coincided with my luteal phase (the four phases of the menstrual cycle are described below) I chalked it all down to “really bad PMS.” Every month was riddled with fear and resistance towards that one inevitable week before my period, but I honestly didn’t know what there was to do about it besides to give myself a ton of rest and basically fall off the face of the Earth for a few days.

Everything changed when I was scrolling Instagram one day to be met with a post by a dear friend titled “Autism and PMDD.” I’m always intrigued by new terminology surrounding autism, so of course I wanted to learn more! What you’re about to read is an excerpt from the chapter “Puberty, Periods, and PMDD” from my book How to Beat Extreme Hunger. I’m so delighted and honored to be able to share this fascinating research and insight with you today!

Before diving into the nitty gritty of what PMDD is and how it’s diagnosed, it’s helpful to briefly outline the four phases of the menstrual cycle:

Four phases of the menstrual cycle

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, such as when coming out of energy deficit and in other mood disorders.

My experience with PMDD

During my own luteal phase, 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. Furthermore, PMDD can cause incredible exhaustion to the point where all I want to do is sleep – 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.

In the days leading up to my period now, feelings of euphoria can turn into depression in the blink of an eye. Not only that, but the preceding week is often filled with insatiable hunger that tends to shut off as soon as I start to bleed. The toughest part of it all, though, is the not feeling like myself. And I don’t just mean feeling “off” or 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.

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

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?

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.

If you want to learn more about PMDD and how to cope with it as a neurodivergent individual, grab your copy of my book How to Beat Extreme Hunger!

Sources:

1. American Psychiatric Association, “Premenstrual Dysphoric Disorder,” in Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (APA, 2022), 171.
2. C.A. Wilson, C.W. Turner, and W.R. Keye Jr., “Firstborn Adolescent Daughters and Mothers with and without Premenstrual Syndrome: A Comparison,” Journal of Adolescent Health 12, no. 2 (1991): 130–137; K.S. Kendler et al., “Genetic and Environmental Factors in the Aetiology of Menstrual, Premenstrual and Neurotic Symptoms: A Population-Based Twin Study,” Psychological Medicine 22, no. 1 (February 1992): 85–100; J.T. Condon, “The Premenstrual Syndrome: A Twin Study,” British Journal of Psychology 162 (April 1993): 481–486; K.S. Kendler et al., “Longitudinal Population-Based Twin Study of Retrospectively Reported Premenstrual Symptoms and Lifetime Major Depression,” American Journal of Psychology 155, no. 9 (September 1998): 1234–1240.
3. Huo et al., “Risk for Premenstrual Dysphoric Disorder Is Associated with Genetic Variation in ESR1, the Estrogen Receptor Alpha Gene,” Biological Psychiatry 62, no. 8 (October 2007): 925–933; V. Dhingra et al., Serotonin Receptor 1A C(-1019)G Polymorphism Associated With Premenstrual Dysphoric Disorder,” Obstetric Gynecology 110, no. 4 (October 2007): 788–792.
4. E.R. Raffi and M.P. Freeman, “The Etiology of Premenstrual Dysphoric Disorder: 5 Interwoven Pieces,” Current Psychiatry 16, no. 9 (2017): 21–28.
5. M. Gao et al., “Global and Regional Prevalence and Burden for Premenstrual Syndrome and Premenstrual Dysphoric Disorder,”Medicine (Baltimore) 101, no. 1 (2022): e28528.
6. H. Obaydi and B.K. Puri, “Prevalence of Premenstrual Syndrome in Autism: A Prospective Observer-Rated Study,”Journal of International Medical Research 36, no. 2 (2008): 268–272.
7. F. Dorani et al., “Prevalence of Hormone-Related Mood Disorder Symptoms in Women with ADHD,”Journal of Psychiatric Research 133 (2021): 10–15.
8. Chakrabarti et al., “Genes Related to Sex Steroids, Neural Growth, and Social–Emotional Behavior Are Associated with Autistic Traits, Empathy, and Asperger Syndrome,” Autism Research 2, no. 3 (2009): 157–177; J. Veenstra-VanderWeele et al., “Autism Gene Variant Causes Hyperserotonemia, Serotonin Receptor Hypersensitivity, Social Impairment and Repetitive Behavior,”Proceedings of the National Academy of Sciences of the United States of America 109, no. 14 (2012): 5469–5474.
9. S.-H. Shim et al., “A Case-Control Association Study of Serotonin 1A Receptor Gene and Tryptophan Hydroxylase 2 Gene in Attention Deficit Hyperactivity Disorder,” Progress in Neuro-Psychopharmacology and Biological Psychiatry 34, no. 6 (2010): 974–979.
10. Andersson et al., “Serotonin Transporter Availability in Adults with Autism—A Positron Emission Tomography Study,” Molecular Psychiatry 26 (2021): 1647–1658; K. Nakamura et al., “Brain Serotonin and Dopamine Transporter Bindings in Adults with High-Functioning Autism,” Archives of General Psychiatry 67, no. 1 (2010): 59–68; C.L. Muller, A.M.J. Anacker, and J. Veenstra-VanderWeele, “The Serotonin System in Autism Spectrum Disorder: From Biomarker to Animal Models,”Neuroscience 321 (2016): 24–41.
11. Banerjee and K. Nandagopal, “Does Serotonin Deficit Mediate Susceptibility to ADHD?,” Neurochemistry International 82 (2015): 52–68; J.F. Quist et al., “The Serotonin 5-HT1B Receptor Gene and Attention Deficit Hyperactivity Disorder | Molecular Psychiatry,” Molecular Psychiatry 8 (2003): 98–102.
12. Dubey et al., “The ESC/E(Z) Complex, an Effector of Response to Ovarian Steroids, Manifests an Intrinsic Difference in Cells from Women with Premenstrual Dysphoric Disorder,” Molecular Psychiatry 22, no. 8 (2017): 1172–1184.