The majority of participants first obtained information about periods through either their parents or through school (see Table 2), with some finding out about menstruation from friends and printed material, and, for a handful of people, from medical professionals or the internet. This pattern was similar across groups, with the exception of fewer autistic women discovering information from friends than non-autistic women.
Figure 1 displays themes and subthemes identified from the analysis. For the sake of brevity, we report the themes below collapsed across both groups (subthemes are italicised). When attributing quotes, ‘A’ refers to autistic respondents, ‘NA’ to non-autistic respondents. Participant numbers are included to illustrate the breadth of responses.
It’s a Normal and Natural Part of Life
Respondents spoke of the taboo associated with having periods. They emphasised the need to reassure young people that periods are “not dirty” (A23) or “something to fear or be ashamed of” (NA36) or “embarrassed by” (NA65); rather, they are a “healthy” (NA96), “natural” (A6) and “normal part of growing up” (NA68). They also felt that it was important for everyone—even those who have not experienced periods—to understand this, so that they “understand what their mum/sister/etc. is going through” (A71). Both autistic and non-autistic respondents further reported that young people need to understand “how their body works and why” (NA94), including biological information about “how the menstrual cycle and organs work, and the anatomy of the vagina/vulva/uterus etc.” (NA59), and “why [periods] happen” (A57). Autistic respondents in particular wanted “more detail about this” (A73).
Understanding the Varied Ways it Can Affect You
Respondents highlighted the need for young people to know “what happens before their first period” (A8) so that it “doesn’t come as a terrifying surprise” (NA16). In particular, they should understand that the cramps that come with periods “can be painful” (NA48), and that there can be other physical symptoms, too, including bloating (water retention), “tender breasts” (A22), “skin changes” (A110) or acne, changes to eating habits, constipation, and “the way it affects your weight” (NA60). Several autistic respondents noted specifically that “it was helpful to know beforehand that I wasn’t dying” (A7) from the bleeding and/or pain.
Respondents also cited the many ways that “it can affect your moods” (NA60)—“before and possibly after your period, not just during” (A29)—and that these changes “are normal” (A66). Some respondents noted the importance of providing an explanation of these “mood swings” (A78) and “the reason one is acting in a particular way” (NA52). Indeed, one autistic participant described, “about once a month, I get anxious and melancholic for no reason. This mood lasts for a day or two, at which point my period arrives, and my ‘normal’ mood resumes. Understanding that about myself makes that melancholy a lot more bearable/manageable and helps my partner understand my behavior/mood” (A52).
Both autistic and non-autistic participants emphasised the need to improve knowledge on “how long it lasts, how often it happens, how heavy/light it will be” (A84) but, critically, that periods vary widely from person to person. Indeed, they felt that knowing that “everyone gets them differently” (A85) would have been helpful for them to understand “that what’s normal for me is not what’s normal for everyone else” (NA41). One autistic respondent summed it up: “Some people get them heavy, some people get them light, not everybody gets them regularly, not everybody gets them exactly 28 days apart, some people get pains, some people get moody, sometimes medical conditions make them irregular, some people get them for more than a week at a time, some people get them for only a couple of days” (A85).
Understanding What’s Not “My Normal”
Respondents felt that it was important to “pay attention to what normal is for me, and to know how to react if my normal changes” (NA41). They spoke of the need for young people to “know how to track their cycles effectively so that they can be aware of how their body is … and be prepared for any irregularities that might occur” (A22), including the amount of pain, the amount of blood and the frequency between periods. They stressed the need to know how to distinguish between, for example, “normal period cramps and unusually painful periods” (NA60) to identify “how much is acceptable before you need to worry” (NA71) and “what could be a warning sign of a medical problem” (A65).
Knowing What to Expect is Key
Respondents suggested that young people needed practical information on the many varied products to use, including a “chance to familiarize themselves with a variety of products before they start” (A50), information on “how to choose menstrual hygiene products” (NA19), where to get them, and “disposal methods” (A28). They stressed that introductory information should be accessible, “breaking down initial concepts” (A15) with a “step-by-step ‘this is how you deal’ instructions and tips” (A42), particularly for young autistic people. They also wanted young people to know about the different strategies available to relieve pain (including medication), and how to deal with mood swings and other symptoms or issues like “acne, cramps, bloating, nausea” (NA35).
Respondents also noted that being prepared is essential. This preparation could include a “script for what to say to a nurse or parent when you start your first one or are unprepared” (A50), knowing “what to do at school, if you are out in a public place, if you are on holiday” (NA113) and having an “action plan for mishaps (stains, stains in public places, forgot supplies, etc.)” (NA50). They also wanted to reassure them that “it’s ok to tell your teachers if you need more time for the bathroom” (NA38) and that it was important to identify “who to ask questions about periods” (NA13) and who to turn to for support, especially “if you might feel there is a problem” (A104).
Periods Exacerbate Autism-Related Challenges
Although some participants were unsure whether their menstrual experiences were related to being autistic (“I have only ever been an autistic person having a period!”; A80), many autistic participants felt that their “symptoms worsen dramatically” (A47), often making “life much more difficult to manage during periods” (A93). One participant stated: “autism does play a role. It can become much more overwhelming and harder to maintain control of the things that already take a lot of effort for us to keep on top of, during a period” (A13). Participants highlighted sensory and self-regulation difficulties in particular.
Respondents felt that sensory issues are intensified during menstruation, as described above. For the most part, these related to pre-existing hypersensitivities becoming “extra sensitive during my period” (A107), such that “everything is magnified when it’s that time of the month” (A78). Participants described “being sensitive to the smell of the blood” (A17), “finding my skin and body more sensitive in general” (A43), being “more sensitive and reactive to noise, touch and visual stimuli” (A99), and “struggling the most with the physical pain from cramps” (A22). Pain could be particularly difficult to bear: “When it’s at its worst, I find myself unable to focus well because all I can focus on is the ache and the sense of where in my body that pain lives” (A44). Participants also reported how these hypersensitivities and the “sensory overload [that] happens far more frequently just before and during a period” (A103) further exacerbated other autistic experiences, including “dealing with unrelated problems caused by my autism (harder to filter noise etc.)” (A28) and being “more prone to self-injurious behavior” (A94).
Participants also highlighted how difficulties regulating emotions and behavior worsened during their period. Some noted that “executive dysfunction gets worse when I have cramps” (A98), which “made dealing with periods difficult—keeping clean and changing pads” (A74). They also highlighted difficulties “recognising and managing my emotions, which is amplified just before and during my periods” (A45) and even “an inability to describe my emotions while experiencing PMS” (A41). One participant explained: “understanding my own emotions has always been difficult for me so any mood swings made life even more difficult” (A17). They also reported that exaggerated difficulties often led to “heightened anxiety” (A99) and, most commonly, meltdowns: “I have more meltdowns, and worse meltdowns, just before my period” (A30). One participant also noted that their epilepsy was affected, with increased seizures during menstruation. These cyclical symptoms were often so severe that participants sought (usually hormonal) medication to manage them.