You are not imagining it, autism is making your periods worse: the link between autism and Pre-menstrual Dysphoric Disorder
Menstruation affects women’s physical and mental health, and is one of the many aspects of life autistic and other neurodivergent people experience differently. I’ve often found myself looking for information related to women’s health and menstruation on my own, as knowledge related to this topic was scarce as part of my professional counselling training. However I know from personal experience that just understanding how to manage life during this difficult and often frequent experience can be a life changer.
What is Pre-menstrual Dysphoric Disorder?
Pre-menstrual Dysphoric Disorder (PMDD), the more severe form of Pre-menstrual Syndrome (PMS), affects about 5-8% of the menstruating population¹. PMDD symptoms typically start after ovulation and end at the beginning of the menstrual cycle and last on average of 6 days. PMDD symptoms can start up to two weeks before menstruation begins and persist for days after menstruation ends, for a total of three weeks per cycle. Symptoms are typically the most intense before the first day of blood flow. PMDD symptoms are thought to be caused by the drop in estrogen and progesterone levels at ovulation. Both estrogen and progesterone affect pathways related to the neurotransmitter serotonin, most known for involved in regulating mood and cognitive functioning.
low-energy or extreme fatigue levels
joint or muscle pain, migraines or headaches
insomnia or disrupted sleeping
hypersomnia or sleeping without feeling refreshed
depressed mood or feelings of hopelessness
anxiety or constantly feeling on edge
rapidly changing emotions
increased sensitivity to rejection
difficulty concentrating or increased forgetfulness
changes to eating patterns
bloating, weight gain
breast tenderness or swelling
How does PMDD affect autistic people?
New research suggests AFAB autistic experience PMDD more intensely than the nonautistic population². Fluctuations in estrogen and progesterone levels are thought to affect serotonin-related neurochemical pathways in the brain’s prefrontal cortex. Serotonin is most known to be involved in emotional regulation, cognitive processing, and executive functioning.
PMDD negatively impacts executive functioning, and regular daily activities become more difficult to manage. Basic life necessities including working, eating, and bathing can be impacted, as are self-care routines. Menstruation related hygiene needs also represent additional work as they often involve plan ahead and making changes to existing routines. Other pressures include being unable to adjust to the demands associated with going outside, such as having to keep sanitary products on hand, or having emergency access to bathrooms.
Emotional regulation depends on similar serotonin-based neurochemical circuits in the brain’s prefrontal cortex. For some AFAB autistics, emotions become more difficult to recognize and describe. Low mood, heightened stress and anxiety, and emotional reactivity become more pronounced during menstruation.
In addition to the regular PMDD symptoms AFAB autistic also experience autistic-specific challenge of heightened sensory differences which has a significant negative impact on their lives.
Sensory issues are associated with the use of period sanitary products, period appropriate clothing, and physical sensation of blood loss. Existing sensory issues are intensified during menstruation. Heightened reactivity to noise, touch, and visual stimuli in combination with existing pain result in increased cognitive overloads and meltdowns.
AFAB autistics often live through those experiences alone. Non-autistic AFAB peers experience relatively fewer challenges and typically don’t see or understand the full extent of the challenges faced by AFAB autistics, who then feels the social pressure to mask, increasing the emotional toll of the experience.
PMDD related negative experiences amplify each other, and the problem becomes cyclical. Autism related executive functioning and sensory challenges makes it harder to mask PMDD related problems, which in turn worsens executive functioning.
What percentage of AFAB autistics are affected by PMDD?
PMDD is one of the more debilitating health issues for autistic people, but research is rather scarce. Only three research papers comparing the percentage PMDD affected individuals between autistic and nonautistic samples.
One often quoted source found PMDD to affect 92% of their autistic participants as opposed to 11% of the nonautistic participants³. This difference is shocking, but the finding doesn’t seem to be grounded on good research principles. The study only surveyed a very small number of participants, consisting of 26 Autistic women and 36 non-autistic women. Of the autistic women included, all were already living in hospitals or other forms of care homes and had intellectual disabilities. Not all of the non-autistic women matched as control had intellectual disabilities. Menstrual symptoms were provided by hospital staff or carers and not by the women themselves, which doesn’t seem to be the case for the control population. The method of secondhand reporting may have skewed the data as the women themselves weren’t the ones providing assessments for their own experiences.
A second study found 20% of their sample of 56 autistic women without intellectual disabilities experience PMDD, compared to 5% in the non-autistic comparison group¹. This study depended on participant self-report and did not rely on intermediary assessments.
A third and most recent found 14% of their sample of 28 autistic women without intellectual disabilities experience PMDD, compared to 9% of their non-autistic sample⁴. The researchers noted the much smaller difference compared to the previous two studies and concluded their result was likely due to chance and the differences between the two groups couldn’t be considered as different from each other.
Conclusion: results unclear
From those contradictory results, it is hard to conclude for sure if AFAB autistics experience PMDD more frequently than non-autistics. Hopefully future research can include larger samples to provide a more confident answer. As the first step is necessary to acknowledge that AFAB autistics do experience menstruation differently than their non-autistic peers and often have a harder time adapting to menstruation-related symptoms and managing life tasks and self-care.
How autistic folks can manage PMDD
Cycle tracking is an important management tool. Having insight into how your body works and knowing what to expect at certain times can provide a way to explain sudden mood changes and also help to prepare for them. Having accessible reminders can also help ease the adaptation needed to routines for hygiene and other needs.
However it should be noted that menstrual cycles are not exact each time, and extra days should be given. AFAB autistics report feeling frustrated when PMDD symptoms appear outside of days expected.
Lifestyle changes like inflammation-reducing diets, exercise, and stress management can also provide relief. Anecdotally I have observed positive improvements in both myself and my clients when we are able to take the extra time and energy to exercise. Even light exercise such as walking for as little as 30 minutes per week, when exercise is manageable can provide a noticeable improvements to energy and pain during menstruation.
Hormonal birth control can also help manage PMDD by providing extra estrogen or progesterone. This typically works by eliminating the menstrual cycle and minimizes PMDD symptoms. However this doesn’t work for all women. Side effects such as fatigue and extreme mood swings may make certain forms of hormonal birth control undesirable.
Other medical options including prescription antidepressants, including Selective Serotonin Reuptake Inhibitors (SSRIs), for the management of mood and executive functioning. SSRIs typically take a few weeks to start being effective, and may result in unwanted side effects, such as weight gain. SSRIs should also be taken with caution, as some cannot be taken concurrently with other medication.
Managing other PMDD symptoms such as migraines can also provide a considerable amount of relief. Preventative migraine medications, or prophylactic migraine medications, can prevent PMDD-related migraines or reduce the intensity of related pain, aura, or other symptoms. However like other medications, migraine prophylactics can cause undesirable side effects, such as reduced appetite, tingling sensations, or more fatigue.
A combination of tools is usually needed. I personally manage my own PMDD through a mix of migraine relief medication, hormonal birth control, regular exercise, and a high anti-oxidant, anti-histamine diet. This might sound difficult to achieve at first, but for me it was a trial and error process that took a number of years. I’m sure that over time, how I manage my PMDD will continue to change.
To recap:
PMDD can be a deeply debilitating and frequently reoccurring experience for a number of autistic women, but whether if more autistic women are impacted as compared to non-autistic women is currently not well researched.
PMDD can make autistic symptoms worse. Challenges to emotional regulation and executive functioning often lead to the loss of routine and the ability for self-care. Masking can become more difficult.
PMDD can be managed by cycle tracking, lifestyle adjustments such as diet changes, exercise, and stress management. Hormonal birth control, SSRIs, and pain medication may also be options.
Citations
Lever AG, Geurts HM. Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 2016;46(6):1916-1930. doi:10.1007/s10803-016-2722-8
Steward R, Crane L, Roy EM, Remington A, Pellicano E. “Life is Much More Difficult to Manage During Periods”: Autistic Experiences of Menstruation. Journal of Autism and Developmental Disorders. 2018;48(12):4287-4292. doi:10.1007/s10803-018-3664-0
Obaydi H, Puri B. Prevalence of Premenstrual syndrome in autism: a prospective observer-rated study. Journal of International Medical Research. 2008;36(2):268-272. doi:10.1177/147323000803600208
Bowden SL, Miller PK. Menstruation among autistic adults: An occupational perspective. British Journal of Occupational Therapy. Published online May 26, 2025. doi:10.1177/03080226251341730
