ADHD, Autism and PMDD
Periods aren’t fun for any of us, especially if you have ADHD or autism. But if you’re someone whose emotions go especially haywire, then there might actually be something even more to it.
Firstly, this blog today is based on a YouTube video I put out. If you would prefer to watch instead of read, you can find the video here:
When I am coaching, I’m not coaching an isolated worker who has pushed everything except work outside of their brain into a little box while they’re at work and then will unpack that box and put work inside it at the end of the day. We’re whole people and the things that happen in our lives affect us at work, especially if we’re neurodivergent, so I’m all about coaching the whole person, and for the roughly half of the population that have periods, this is something that really does affect the whole person.
I’ve already posted two videos talking about the theoretical science behind ADHD and periods as well as the lived experience of those afflicted with them but I was missing an important part of the conversation and that’s what I’ve come back to talk about today. And that topic is Premenstrual Dysphoric Disorder, also known as PMDD.
I love the regimented march towards tackling the period we have going on here.
Now if you haven’t heard of PMDD, you probably have heard of PMS or premenstrual symptoms. PMDD is basically PMS turned up to 11. Per the NHS: “Symptoms of PMDD are similar to PMS but are much more intense and can have a much greater negative impact on your daily activities and quality of life”
The reason why I’m talking about it today is because it’s really not spoken about very much at all, to the point where I didn’t find out about it for months after my ADHD diagnosis despite all the research I was doing and it wasn’t until a friend mentioned it to me that I started researching into what it actually is. And what you won’t be surprised to hear, given the topic of this post, is that it affects people with ADHD and Autism much more than the general population.
So today I’m going to take you through what PMDD is as well as looking at some of the academic research around it which does turn up at least one solution of how to make things a little bit better. So without further ado, let’s get into the topic.
To start with I wanted to take a look at the definition of PMDD in the DSM-V, but before I do that, I do have to make the usual disclaimer that I’m not here to diagnose anyone and you should talk with your healthcare provider if you think you might have PMDD. I’m just sharing information here so that you can be informed about your own mind and body. So with that out of the way, let’s get into it.
Sharing information should be as ubiquitous as sharing pads.
The definition starts with the sentence that: “In the majority of menstrual cycles, at least five symptoms must be present in the final week before the onset of menses, start to improve within a few days after the onset of menses, and become minimal or absent in the week postmenses.”
Now the language is pretty confusing because it then lists two groups of symptoms saying one or more of the following symptoms must be present, but I believe this is that at least one symptom must be present from each group and there must be a total of at least five. So here is the first group of symptoms:
1) Marked affective lability (e.g. - mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection)
2) Marked irritability or anger or increased interpersonal conflicts
3) Marked depressed mood, feelings of hopelessness, or self-deprecating thoughts
4) Marked anxiety, tension, and/or feelings of being keyed up or on edge
And the second group is:
1) Decreased interest in usual activities (e.g. - work, school, friends, hobbies).
2) Subjective difficulty in concentration
3) Lethargy, easy fatiguability, or marked lack of energy
4) Marked change in appetite; overeating; or specific food cravings
5) Hypersomnia or insomnia
6) A sense of being overwhelmed or out of control
7) Physical symptoms such as breast tenderness or swelling, joint or muscle pain, a sensation of “bloating,” or weight gain
And within that I can already see things like rejection sensitive dysphoria, emotional dysregulation and executive function struggles. Already symptoms that overlap with ADHD. They add a note that says most of these symptoms in the criteria must have been met for most menstrual cycles that occurred in the preceding year.
These symptoms have to cause clinically significant distress or interfere with work, school, social activities or relationships, they can’t be caused by an exacerbation of another mood disorder (although it can occur with that disorder) and should be confirmed by daily ratings for at least two symptomatic cycles. Finally they can’t be attributable to things like medication, drug use etc or another medical condition.
Sometimes we're so low on executive function that sitting staring at a light is all that we can manage while the inside of our mind is trying so hard to get us up and moving.
So with that in mind, let’s take a look at some of the research out there linking PMDD to both ADHD and autism. I want to start out with a 2021 paper called “Prevalence of hormone-related mood disorder symptoms in women with ADHD” which looks at PMDD, Postpartum Depression and climacteric mood symptoms in women with ADHD.
It begins by acknowledging that female ADHD patients tend to experience more depression and anxiety than both their male counterparts and people without ADHD, with both earlier onsets and longer episodes of depression and anxiety. They also note that from their clinical experience, afab with ADHD experience more severe mood changes during periods of hormonal change and so they looked to investigate this further.
The study was made up of female patients of the PsyQ outpatient clinic for adult ADHD in The Hague, The Netherlands during April and May 2016. They were all adults, met the DSM-4 criteria for ADHD and had a mean age of 34.5 years old.
Much like in the DSM-5 criteria for PMDD, participants filled in a self-report questionnaire designed to assess for changes in things like mood, energy, concentration, being in control and other similar related symptoms to PMDD.
As a point of comparison, the study performed a brief metaanalysis on similar PMDD studies among the general population and found that the prevalence of PMDD was between 23 and 31% with an overall average of 28.7%. From their self-report questionnaires among the ADHD cohort however, the prevalence was much higher at 45.5%.
They say we need to apply some caution when comparing these numbers directly though. Firstly they only tracked symptoms through one cycle, and secondly the fact that this group were psychiatric patients meant they may have had more symptoms in general than the rest of the population. It’s unclear to me whether they’re counting ADHD as part of that.
They also split the ADHD groups into two, a PMDD group and a non-PMDD group for comparison. In the PMDD group they found significantly less hormonal contraceptive use at 50.6% compared to 68.1% and that in the PMDD group the main reason given for using contraceptives was due to premenstrual symptoms. This was only at 22% for the non-PMDD group.
They also found that using hormonal contraceptives was associated with a lower number of PMDD symptoms and antidepressants was associated with a higher number of PMDD symptoms. This suggests that a hormonal contraceptive might lessen the impact of PMDD symptoms which is also the top recommendation on the NHS website for PMS (although the NHS website does also recommend antidepressants which were found to be worse in this paper).
Anecdotally I've heard people share experiences that the type of hormonal contraceptive matters but there has yet to be any research in this space. So if you're struggling with your current contraceptive, it might be worth trying another.
Moving away from ADHD and onto Autism now, and this paper “Prevalence of Premenstrual Syndrome in Autism: A Prospective Observer-rated Study” is actually quite interesting due to the lengths it goes to to control for other possible issues that could be responsible.
In fact, I’ve not really seen a study like this before because when it’s comparing the prevalence of PMDD in autistics vs allistics, or non-autistics, it is actually comparing autistics with learning disabilities against women who were not autistic but also had learning disabilities.
This makes sense because there is a significant overlap between autism and learning disabilities and by ignoring this overlap like much literature I’ve read leads to results where it’s not quite certain if this is caused by autism directly or by its comorbidities. So it’s interesting that this paper controls for this to directly isolate autism.
On top of this, the study also matches participants in terms of age, in-patient status, intelligence, marital status, parity, behavioural problems and ethnicity and tracked their behaviour over three menstrual cycles. Note in this case none of the participants were using hormonal contraception, had no other psychiatric disorders and had normal physical and laboratory examinations.
Independent observers were used to monitor potential PMDD symptoms in the participants and were blind to both their autism status where possible and their menstrual symptoms. The staff also did not know about the study goals.
The results were actually quite shocking. They found that 92% of the autistic women fit the diagnostic criteria for PMDD and only 11% of the control group did. This is absolutely huge and indicates that PMDD is a huge problem for autistics and one that we should be talking about a whole lot more.
However, this is one of these cases where results of studies vary significantly. This paper I’ve just been talking about was written in 2008. A separate study in 2016 found this to be much lower, at 21% of autistic women compared to 3% of non-autistic women. This result is still significant however because well frankly the difference between 3% and 21% is still huge, you don’t need me to tell you that. (Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. (Lever & Geurts 2016))
However, a third more recent paper from 2022 which had the very punny title: “Menstruation and menopause in autistic adults: Periods of importance?” found the PMDD rate to be 14.3% in autistic women versus 9.5% in allistic women. I will note however that neither of these papers comment on contraceptive use in their assessment of the prevalence of PMDD. From health guidelines and the first paper on ADHD, it seems as if hormonal contraception is important here, so by not including it in the analysis they may be understating rates of PMDD.
Regardless of the fact that the number keeps going down, even at this lower number, this is still a substantial amount of autistic womeNow I was all over google scholar googling “ADHD and PMDD”, “Autism and PMDD” and variations on the two and not much has been published at all really on this topic. But I did manage to stumble across a paper abstract that was pre-publication at the time of writing this video and this was looking at women diagnosed with PMDD to see whether they were more likely to have ADHD. (Comorbid Attention Deficit Hyperactivity Disorder in Women with Premenstrual Dysphoric Disorder, Lin et al., 2024)
Just think how many people are being held back from conquering the world due to PMDD.
Now I only have access to the paper’s abstract, so I can’t evaluate it too closely, however they state the results that women with PMDD were more likely to have comorbid ADHD and higher levels of inattention across the menstrual cycle. With a two-way linkage in both directions, this could mean this topic is an important discussion in the medical field going forward.
So that’s it for today. I’m sorry I couldn’t go into a huge amount of detail on this topic because the research just isn’t out there yet. But hopefully what is out there inspires more and more research into this topic.
The main takeaway that I can give you if you are experiencing PMDD symptoms is that hormonal contraceptive might be something to look into based on the studies and NHS recommendations but of course it’s important to speak to your doctor before starting any new medication.
If this resonates with you and feel you would be interested in talking to an adhd and autism-friendly coach, feel free to get in touch. If you’re looking for more blog posts, you can find them here.
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