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Gender-Specific Care
Menstruation & Premenstrual Syndrome (PMS)
There is more openness around discussing female reproductive health than when many current adults entered puberty, and more and better options for managing menstruation and 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
How is Autism Different in Women?
Autism is a diverse condition that affects individuals of all genders. Although it is still more commonly diagnosed in males, recent research suggests that the disparity is shrinking as awareness of how autism presents in females increases. This article is based on a LurieNOW article by Dr. Alyssa Milot Travers, a licensed psychologist at the Lurie Center for Autism with specific expertise in women on the autism spectrum. Dr. Travers is also an Instructor in Psychiatry at Harvard Medical School. Autism is a diverse condition that affects individuals of all genders; the overall prevalence estimate of autism in the U.S. is one in 36 children. According to the Centers for Disease Control and Prevention (CDC), as of March 2023 about 4% of boys and 1% of girls age 8 years have autism. Although an autism diagnosis occurs more often in men than in women, recent research suggests that autism in women may be both underdiagnosed and misdiagnosed. Recognizing and understanding how autism presents in women is crucial for accurate diagnosis, appropriate support, and targeted interventions. The evolving understanding of gender differences in autism is dismantling the notion that autism is more or less a “male condition.” Gender identity in autism research The majority of autism research in recent decades has focused on cisgender individuals, or those who have a gender identity that matches their sex assigned at birth. The most current research reveals that gender diversity is more common in autistic people than in their neurotypical peers. Consequently, there is a slow but distinct shift toward including gender diversity in autism research, which will provide a more accurate representation of all autistic individuals. The current knowledge of the female subtype of ASD is based on research of cisgender women. Outward signs: Special interests and repetitive behaviors Restricted interests and repetitive behaviors occur in autistic men and women; however, the nature of these behaviors can differ. Traditionally, clinicians have been trained to recognize stereotypical male-associated restricted interests, such as transportation, dinosaurs, or space. In contrast, autistic women may develop interests that are more closely aligned with societal norms, such as animals, art, celebrities, or literature. This divergence can contribute to the misconception that women with these types of restricted interests are simply displaying enthusiastic hobbies rather than autistic traits. Repetitive patterns of behavior in women may manifest as classic autistic behaviors like rocking or hand/finger movements. However, they may also appear as behaviors not necessarily associated with autism, such as perfectionistic tendencies or restrictive patterns of eating/eating disorders. Impediments to an ASD diagnosis: Overshadowing, masking, and camouflaging Based on behavioral history, women may be more apt to receive diagnoses such as anxiety, mood disorders, learning disorders, and/or eating disorders rather than autism. This phenomenon is called diagnostic overshadowing, which occurs when a person’s symptoms are attributed to a psychiatric problem versus an underlying medical condition or a developmental delay such as autism. This can complicate the diagnostic process, as the focus may be on managing these secondary conditions rather than recognizing the underlying autistic traits. Autistic women are also more likely to develop compensatory strategies to mask their challenges. For example, women often have stronger social imitation skills and the ability to mimic social behavior compared to men. Due to their social foundation, girls may develop one or two close friendships, helping them absorb social rules and norms. Their strong social interest may lead them to “camouflage” or compensate for social understanding and communication challenges, making these vulnerabilities difficult to detect in everyday interactions or larger classroom or employment settings. As a result of these differences, women are often more likely to be diagnosed later in life, if at all. The Autistic Women and Nonbinary Network provides useful information and resources for gender-diverse autistic individuals. For diagnostic resources, see our article about seeking an ASD diagnosis as an adult. Recommended Reading and Viewing For women: Camouflage: The Hidden Lives of Autistic Women by Dr. Sarah Bargiela 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know by Rudy Simone The Autistic Brain: Exploring the Strengths of a Different Kind of Mind by Temple Grandin Odd Girl Out: An Autistic Woman in a Neurotypical World by Laura James From the American Autism Association: 5 TedX Talks from Women with Autism For caregivers: A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support by Dr. Judy Eaton Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols with Gina Marie Moravcik and Samara Pulver Tetenbaum For partners of autistic adults: The Other Half of Asperger Syndrome: A Guide to Living in an Intimate Relationship with a Partner Who is on the Autism Spectrum by Maxine Aston