Menstruation & Premenstrual Syndrome (PMS)

Autism is not known to affect when menarche (the onset of menstruation) occurs, which is usually between the ages of 11 and 13. Many factors can affect when a first period occurs, including but not limited to:

• overall health

• family size and health history

• health and nutrition habits

• psychological factors, such as stress

• environmental factors, such as exposure to toxins

• socioeconomic and demographic status.

Hygiene and routine care

Establishing routines for good hygiene is key to maintaining positive health through the lifespan of autistic women. There is more openness around discussing menstruation as well as options for managing related issues, compared to when many current adults started puberty. A PCP, family practitioner, or gynecologist can advise patients and caregivers about information and issues surrounding menstruation. Clinicians and caregivers can consider where autistic patients are in their reproductive timeline to ensure an understanding of topics such as:

• terminology and language for talking about menstruation

• blood flow and frequency, and what characterizes a “normal” period

• importance of menstrual calendar and cycle tracking

• how to manage tampons, cups, pads, and period-proof underwear

• role of caregivers or group home staff in monitoring and assisting menstrual processes to assure good hygiene.

• Side effects and symptoms

Menstruation is not static; physical and emotional changes continue throughout a woman’s reproductive years. What is normal for one person may not for another. Recent studies indicate that autistic women have higher rates of menstrual issues than is typical of their peers, such as irregular cycles, painful periods (dysmenorrhea), and excessive bleeding. Cramps, nausea, and abdominal pain are common side effects; however, any changes in intensity or frequency should be discussed with a woman’s clinician, especially if they are severe enough to interfere with the ability to work or attend school.

Premenstrual syndrome (PMS)

Physical and behavioral symptoms related to cyclical hormonal fluctuations that occur before a period begins are known as premenstrual syndrome (PMS). PMS is more common in autistic women and can be particularly difficult to manage. Symptoms such as the ones listed below should be brought to the attention of a woman’s clinician:

Physical

• changes in appetite

• fatigue

• migraines

• nausea

• seizures

• worsening irritable bowel syndrome

Emotional

• anxiety

• depression

• mood swings

• aggression toward caregivers.

Addressing menstruation-related Issues

In some cases, patients and caregivers may want to consider menstrual suppression to provide relief for menstruation-related mood and behavior changes. Contraceptive medications are typically used to suppress the hormones that control menstrual flow. The decision to use these medications should be discussed among the patient, clinician, and, where appropriate, the caregiver/guardian who helps with medical decision making. That conversation should include discussing:

• interactions between contraceptive medication and other medications

• medical or digestive issues, such as IBS, that might affect the absorption of contraceptive medication

• risk factors for potentially dangerous side effects, such as blood clots

• the rationale for using contraceptive medication and its impact on decisions surrounding sexual activity

• risks and privacy considerations for patients who live in independent and group home settings

• revisiting contraceptive medication decisions as women approach midlife and menopause.

Learn more:

The Autism-Friendly Guide to Periods by Robyn Steward

The National Library of Medicine fact sheet on Menstrual Suppression

From Harvard Health:

• Heavy Menstrual Periods

• Endometriosis

• Gyn Care 101: What to know about seeing a gynecologist