Nearly 20(!) years ago, I conducted research for my doctoral dissertation about how and what girls learn about menstruation. I researched the literature and interviewed girls ages 11-16 about what kinds of information about menstruation they received and the sources of their menstrual knowledge. Among my findings, I learned that even girls who had received adequate menstrual education from school and parents did not consider themselves prepared for their first periods. They wanted to know more about what menstruation would feel like – not more about ovaries and hormones (although research and anecdotal evidence suggests their knowledge in that area is not as well-developed as they believe). They had serious questions about whether it would hurt, how often they would need to change their menstrual pads, and other phenomenological questions about the experience of menstruation. This kind of information is seldom part of formal menstrual education, but the girls in my study found ways to seek out this information, often through girlfriends and sometimes through popular culture sources, such as teen magazines.
These issues are even more important to girls with autism or other special developmental needs. This morning I stumbled upon this discussion at change.org about how communication with one’s daughter about what to expect at menarche is even more critical for autistic girls:
[w]hile I knew full well what menstruation “was,” my lack of expressive communication created a pretty major problem. And that wasn’t the only major problem. There was also the issue of the cramps, low blood pressure, and other ill effects which completely confused me on every level. My internal body sense is very poor, so I would mistake cramps for needing to use the toilet, or (much worse) needing to use the toilet for cramps. Self care issues with cleanliness were a big problem. On top of that sensory issues with pads were so bad that menstruation was truly a nightmare event. As I’ve aged, I’ve found ways to cope with all of these things, but it would have been much better had I found those ways to cope as a pre-teen rather than as an adult.
As someone who came of menstrual age in the 1970s when disposable menstrual pads were the approximate size and thickness of an entire box of Kleenex, I chuckled to myself when adolescent girls of the early 1990s complained to me that their paper-thin, modern pads felt like diapers. Knowing little about autism or its variants at the time, it didn’t occur to me how different the sensory experience of wearing pads could be. I’m glad I kept my amusement to myself, and I second the recommendations for instructing girls about menarche from Dora, the writer quoted above, whether they are autistic or not.
1. Communication–communicating about it when it happens, self-advocating for needs related to it
2. Sensory and motor issues with feminine products–tampons or pads, cloth or paper, consideration both of what feels (from a sensory angle) least irritating and is within the person’s motor capacity for managing
3. Internal body sense–managing pain or any other “sickness” associated with menstruation, the distinction between menstruation-related sensations and other body sensations
4. Schedule and hygiene–routines and schedules for managing feminine products, motor and executive function skills for maintaining hygiene, getting assistance if necessary
