Abstract
Occupational therapy practitioners can support autistic individuals as well as their parents and caregivers with menstruation and menstrual hygiene management.
The onset of menstruation is a critical milestone that many individuals experience across the world (Sommer, 2010). Menarche, the initial onset of menstruation, typically occurs between ages 10 and 14 (Ajong et al., 2020; Sumpter & Torondel, 2013). Menarche indicates the transition from childhood to adulthood, which may be a difficult time for many adolescents and their families (Ajong et al., 2020; Quint et al., 2016). Adolescents experience physical, mental, and emotional changes once they reach puberty and during their menstrual cycles (Secor-Turner et al., 2022). Menstruation includes a range of symptoms, including dysmenorrhea, also known as cramps; bloating; fatigue; mood fluctuations; and headache, all of which can vary in intensity and duration among individuals (Ajong et al., 2020; Quint et al., 2016; Steward et al., 2018; Sumpter & Torondel, 2013; Wilbur et al., 2019). To manage the physical changes that come with reaching puberty and menstruation, individuals must engage in menstrual hygiene (Sumpter & Torondel, 2013; Wilbur et al., 2019).
Good menstrual hygiene helps prevent infections, minimize odor, and promote comfort throughout the menstrual cycle (Sumpter & Torondel, 2013). Menstrual hygiene management (MHM) is defined as use of the supplies needed and used to control menstrual bleeding and remain sanitary to the self and others (Quint et al., 2016; Steward et al., 2018; Sumpter & Torondel, 2013; Wilbur et al., 2019). This includes access to appropriate menstrual products, including sanitary pads, tampons, menstrual cups, and period underwear. Ensuring a range of product choices is essential to accommodate diverse personal preferences, cultural contexts, and environmental considerations. Equally important is the ability to use, change, and dispose of these products safely and hygienically. Hormonal birth control can be a valuable option for managing menstruation because it can regulate cycles, reduce menstrual flow, or even suppress periods entirely (Quint et al., 2016). This can be especially beneficial in cases where managing menstrual care independently is challenging or where access to appropriate support and facilities is limited (Sumpter & Torondel, 2013).
MHM requires that individuals possess the fine motor skills necessary for the use of menstrual products, along with the ability to navigate the textures and sensations associated with them. They must also have the executive functioning capabilities to comprehend, plan for, and anticipate their menstrual cycles as well as to know when to change their menstrual products. Without proper education, individuals may have difficulty understanding their own bodily changes and managing their menstrual cycles (Secor-Turner et al., 2022; Wilbur et al., 2019). Individuals with disabilities may be challenged to manage their own menstrual cycles independently, not only because of a lack of health education but also because of the disabilities themselves and the tasks required to manage monthly menstruation cycles (Quint et al., 2016; Wilbur et al., 2019).
Autism, or autism spectrum disorder (ASD), is a neurodevelopmental condition characterized by differences in brain development that can impair communication, social interaction, and behavior patterns (Patten et al., 2024). Autism occurs among females at a ratio of one female to every four males (Centers for Disease Control and Prevention, 2023). Although there is a developing body of research related to ASD, only a limited number of studies have focused specifically on females with ASD (D’Mello et al., 2022; Groenman et al., 2022; Lai et al., 2015; Supekar et al., 2022). Moreover, there is a significant gap in research about how they experience the onset and management of menstruation as well as any menstrual education they receive (D’Mello et al., 2022; Secor-Turner et al., 2022; Supekar et al., 2022). Menstruation for this population is often overlooked by health and education professionals (Secor-Turner et al., 2022). Menstruation for autistic individuals amplifies “pre-existing autistic features,” such as sensory sensitivities, emotion regulation, and behavioral needs “before, during, and after menses” (Steward et al., 2018, p. 4291). Autistic individuals who experience a menstrual cycle are more susceptible to menstrual irregularities, sensory overload, and more intense cramps (Bitsika & Sharpley, 2018; Simantov et al., 2022; Steward et al., 2018).
Autism directly affects overall functioning because the individual may not be fully independent in the tasks they encounter throughout their day (Lamash & Josman, 2020). Because this directly affects their autonomy, many autistic individuals receive services (e.g., occupational therapy) from a young age to address these areas of need. The role of occupational therapy with respect to autistic individuals focuses on addressing sensory concerns, emotion regulation strategies, proper hygiene practices, behavioral management, safety, and family routines (Patten et al., 2024). According to the Occupational Therapy Practice Framework: Domain and Process (American Occupational Therapy Association [AOTA], 2020), menstruation and MHM are included in the activities of daily living (ADLs) category—“toileting” and “toilet hygiene”—and within the instrumental activities of daily living category, under health management: “symptom and condition management,” “communication with the health care system,” and “personal care device management” (AOTA, 2020, pp. 30, 32). A survey that focused on puberty challenges for autistic adolescents found that less than 26% (n = 71) of occupational therapy practitioners reported addressing menstruation with this population (Larson et al., 2021).
Parents play essential roles in guiding their autistic children through menstruation and MHM, and many express anxiety about how best to address this (Ballan, 2012; Cridland et al., 2014). Parents have noted a variety of challenges when helping their autistic child manage periods, including their refusal to wear pads, constant prompting needed to change pads, trouble understanding the reason for and process of menstruation, difficulty reading bodily signals, and lack of social discretion (Chou & Lu, 2012; Cridland et al., 2014; Cummins et al., 2020; Mademtzi et al., 2018; Navot et al., 2017). Parents have also reported a higher incidence of behaviors in the days before menstruation because of hormonal changes (Chou & Lu, 2012; Cummins et al., 2020). Because of limited resources available for educating autistic adolescents on menstruation, parents often seek advice from other parents who have handled similar challenges (Cummins et al., 2020). Parents report using a variety of methods to address MHM with their autistic adolescents, including the use of contraceptive pills, one-on-one teaching of skills, social stories, life-size dolls, and visual supports (Cummins et al., 2020; Holmes et al., 2019). A social story is defined as a script that is used to teach appropriate or socially acceptable behaviors to adolescents with developmental disabilities, including ASD (Tarnai & Wolfe, 2008). One study found social stories, along with task analysis interventions, to be a highly effective method of menstrual education for teaching autistic females about menstruation and MHM (Klett & Turan, 2012).
Although research on the intersection of menstruation, autism, and occupational therapy remains limited, some studies have explored the relationship between menstruation and autism (Bitsika & Sharpley, 2018; Cridland et al., 2014; Cummins et al., 2020; Groenman et al., 2022; Klett & Turan, 2012; Steward et al., 2018). Cridland et al. (2014) investigated the experiences of autistic girls in Australia through the perspectives of both the girls and their mothers. Their findings identified several key challenges, including difficulties socializing with neurotypical peers, navigating gender-specific aspects of puberty, and heightened vulnerability in sexual contexts. A preliminary study conducted by Steward et al. (2018) surveyed postmenarcheal autistic (n = 123) and nonautistic (n = 114) individuals and identified overlapping menstrual experiences as well as distinct challenges among autistic respondents; specifically, autistic individuals reported cyclical increases in sensory sensitivities and difficulties with emotion and behavior regulation, which had a significant negative impact on daily functioning.
Occupational therapy currently lacks clear, evidence-based strategies to help autistic individuals effectively manage menstruation. Exploring the perspectives of parents is crucial because they play a central role in the lives of their autistic children and in addressing menstruation and MHM. To date, no qualitative study in North America has yet specifically investigated the views of parents of autistic daughters regarding menstruation and MHM. This research seeks to assist occupational therapy practitioners in understanding the experiences that parents face with their autistic daughters when managing their menstrual cycles. A thorough understanding of all facets involved in menstruation and MHM is essential so that occupational therapy practitioners may be informed to address what is often considered an unspoken, intimate area of women’s health.
In this qualitative study, we sought to investigate parents’ perspectives and gain knowledge through exploring their firsthand experiences when addressing menstruation and MHM with their autistic daughters. Biopsychosocial theory guided this research because it is based on a holistic approach in which three domains of biological, psychological, and social areas overlap each other with respect to the core of overall health and wellness (Borrell-Carrió et al., 2004). In this study, the core is menstruation and MHM. The biological domain encompasses the diagnosis of ASD and the specific characteristics unique to it (Whelpley et al., 2023). The psychological domain assesses self-image, identity, how the individual views their own diagnosis of autism, and how it affects them day to day (Lehman et al., 2017). Autistic individuals report feeling a disconnect between their body image and their actual body unless body parts are in clear view of them, which leads to a lack of self-ownership and reports of discomfort from bodily sensations (Asada et al., 2018). The social domain includes social expectations; support groups, such as friends and families; parental roles; and relationships (Whelpley et al., 2023).
The research question for this study was “What are the experiences parents encounter when addressing menstruation and MHM with their autistic daughters?” Because of the dynamic role occupational therapy plays in the lives of autistic individuals, it is important to understand the experiences of parents with menstruation and MHM with respect to their autistic daughters. Gaining insight from these parental experiences may contribute to an understanding of how occupational therapy can support both parents and their autistic children on this essential topic.
Method
Design
This study had a qualitative research design, and a phenomenological approach was used to gather descriptive data on the lived experiences of parents regarding the topic of menstruation and MHM with their autistic daughters. A rich description of parents’ experiences was gained through the use of semistructured interviews because they allow for subjective responses about a lived experience (McIntosh & Morse, 2015). Numerous steps were taken throughout the study to ensure the rigor of the qualitative design. The interviews followed a guide (presented in the Appendix) that was specifically developed for this study and was reviewed by two experienced qualitative researchers, external to the research team, to avoid potential biases and to assess the appropriateness and thoroughness of the interview items (Kallio et al., 2016). The interview guide was field tested with two parents of autistic daughters to assess the relevance of the content and provide helpful information about the implementation of the interviews (Kallio et al., 2016). Feedback was then gathered from both parents regarding the clarity of the questions, the structure of the interview, and the overall interview experience. This provided valuable insights into whether any necessary revisions or clarifications needed to be addressed. All research team members successfully completed a webinar on qualitative research interviewing before the interviews were conducted.
Participants
Eight participants, all of whom identified themselves as a parent of an autistic daughter or daughters, including seven biological mothers and one adoptive father (Table 1), were recruited through convenience and snowball sampling. Personal networks of the research team were used for recruitment, and participants were asked to assist the researchers in identifying other potential participants for the study. Potential participants were notified of the study through an introductory email, with the study’s informed consent form and demographic survey attached through the Qualtrics platform. The inclusion criteria for this study were that the participant must be a parent, foster parent, or legal guardian and a full-time caregiver of a child with a diagnosis of autism spectrum disorder who has experienced menstruation. The exclusion criteria of the study were persons whose primary language is not English and those who did not live in North America.
Participants’ Demographic Information
Note. ADHD = attention deficit hyperactivity disorder; AOS = apraxia of speech; F = female; FAS = fetal alcohol syndrome; ID = intellectual disability; m = male; RA = rheumatoid arthritis.
Procedure
Semistructured interviews were conducted with each participant over Zoom in a one-to-one format following the study-specific interview guide. Interviews took place from September to November 2023. Participants completed the consent form and the demographic survey before the interview was scheduled. Zoom was used not only because of its ease in accessibility for the participants’ interviews but also because it provides both audio and visual methods of interviewing, enabling interviewers to establish rapport and trust with the participants. Each Zoom interview lasted approximately 1 hr and was recorded so that the audio transcriptions could be saved and used for data analysis.
Each transcription was cleaned by two research team members, including one of the research team members who had conducted the interview. Member checking was conducted with all participants to ensure trustworthiness of the data. Glynnis Jones provided each participant with their interview transcript and a summary of emerging themes for the purpose of sharing the interpretation of the data and determining their accuracy from the participant’s perspective. All personally identifying information on the transcripts was redacted. The transcripts from the Zoom interview were deidentified and assigned a participant ID by Jones. The deidentified transcripts from Zoom and the master document with participant names and assigned participant IDs were stored on Jones’s password-protected computer and were destroyed upon completion of the study.
Data Analysis
Dedoose (Version 9.0.17; SocioCultural Research Consultants, 2016) was used to analyze the data. Dedoose is a web application that can be used for thematic analysis in qualitative research. It uses advanced encryption data to maintain confidentiality. Each deidentified transcript was imported to Dedoose by Jones. We used Braun and Clarke’s (2006) Six-Phase Thematic Analysis framework for thematic analysis to ensure that all of the content of the transcripts were collected, analyzed, coded, and compared. In the first phase, each member of the research team independently familiarized themselves with the transcripts. Next, the research team members separately generated initial codes. After this, they reconvened to reach a consensus on the final coding. With oversight from Jones, the interview team developed a codebook that included a list of the codes as well as definitions of the codes to assist in the analysis of the data. The team maintained an audit trail of the iterative changes and revisions to the codebook throughout the coding process. To ensure intercoder reliability, team members cross-validated and verified each other’s codes to guarantee a consensus among coded quotes. The next phases of the process included searching for themes, reviewing the themes, and defining the themes. In assessing the responses in the transcripts, generalizations arose on the experiences of parents addressing menstruation and MHM with their autistic daughters.
Results
Seven themes emerged from the interviews: (1) inadequate expertise in women’s health and ASD among medical professionals, (2) parental dependency, (3) intensified sensory experiences before and during menstruation, (4) limited menstrual awareness and understanding in individuals with ASD, (5) menstrual product preferences, (6) parental feelings about managing menstruation, and (7) strategies that worked for managing menstruation.
Inadequate Expertise in Women’s Health for Individuals With ASD Among Medical Professionals: “They’re Not Like Other Patients”
Most parents stated that medical professionals were unsure how to approach menstruation and MHM effectively in relation to their daughters’ ASD. Some parents reported that they could not adequately access women’s health services, such as gynecology, for their autistic daughters, indicating that they are not equipped with the knowledge regarding the effects autism has on managing menstruation. Parent No. 1 explained, We have not taken her to a gynecologist yet, and I have my own, but I don’t think that that person is [a good] fit for her. So I haven’t found somebody that we would be comfortable taking her to.
When parents were asked what they desired of medical professionals during this process, Parent No. 3 reported, “It would help if the medical community was more aware,” and Parent No. 5 stated, “There should be health care professionals that are really aware of all [their autistic daughters’] issues. They’re not like other patients. They have to spend extra time.” More specifically, Parent No. 1 expressed, “I am not comfortable with the [current] doctor. I haven’t found a doctor. There is little understanding; there is little education. [Parents] all commiserate together, and I haven’t found any answers yet.”
Five of the eight parents made specific reference to the lack of medical professionals who are educated on the issue of menstruation for autistic individuals. Conversely, the three remaining parents had not found equipped medical professionals but instead reported that their autistic daughters required milder support needs. Nonetheless, these parents still made general comments about being hesitant to seek medical care, with Parent No. 8 stating, “She wasn’t ready,” and Parent No. 2 expressing, “It’s scary; it’s really scary.”
Parental Dependency: “It Was Mostly Me”
All eight parents reported that either their daughters at one point were dependent on them in general or were still heavily dependent on them for menstrual management. Regardless of whether their autistic daughters required minimal or maximal assistance, their daughters needed help from one or more members of the family. Parent No. 7 voiced in the interview, “I’m always checking her,” and “I do have to remind to change her pad.” Similarly, Parent No. 5 verbalized, “I help my daughter by laying the underwear on the bed and placing the pad on the underwear onto the bed”; otherwise, “the pad will stick onto itself and the wings and will become unusable.” In addition, Parent No. 4 explained, “It was mostly me: [I] just put her pad on, changed her, and that was it. It was just instinct.” Parent No. 1 said, “She’s not independent when it comes to hygiene at all, and she’s not able to change her pads.” This need for assistance occurs not just during the day: Parent No. 3 noted that “I had to be there while she was changing pads. I had to get up with her in the middle of the night if she got dirty.”
Although autistic daughters depended on their parents for menstrual management, many parents expressed the importance of promoting bodily autonomy and independence, with Parent No. 6 emphasizing, “She needs to be as independent as possible in her life” and Parent No. 3 explaining, “I don’t want anybody to have to do that to her, for her. I want her to be able to do it on her own.” Parent No. 8 reinforced this point by telling her daughter “You can’t let things get in the way of life, and you have to expect the unexpected and be uncomfortable being uncomfortable; [the ASD diagnosis is] a part of who you are and your brain.”
Intensified Sensory Experiences Before and During Menstruation: “You Can See It’s Coming”
Seven parents clearly noted that their daughters often experience more pronounced sensory sensitivities, and heightened sensory experiences, during menstruation. Parent No. 4 explained that there was “more rocking, stomping of the feet, or the constant hum leading up to her menstrual cycle. You can see it’s coming.” Parent No. 8 noted that their daughter experienced heightened sound sensitivity during her menstrual cycle and therefore has to wear earplugs during this time to ameliorate that intensified sensory experience. Parent No. 2 highlighted that their older autistic daughter experienced heightened emotional challenges, including frequent meltdowns, especially prior to and during her menstrual cycle. Parent No. 5 described their daughter’s behavior as “consistently anxious during her menstrual cycle, noting a continuous low-level reactivity that they associate with a form of underlying anxiety,” and Parent No. 7 explained, “She literally would be sitting there crying. She was very weepy, because she started her period.” On the other hand, Parent No. 3 detailed how her autistic daughter demonstrated increased sensory sensitivity during her menstrual cycle, stating, “She likes to be clean. She gets icky from messes. So, at the beginning she wanted to take a bath every time she changed her pad.” Unique among participants was Parent No. 1, who expressed, “The biggest problem with her menstruation is keeping clothing on.” In these statements from the interviews, the parents shared their observations of and concerns about their autistic daughters and how their behavior is influenced by their menstrual cycles and associated sensory changes.
Limited Menstrual Awareness and Understanding: “To Her, It Just Is”
Many of the parents noted that their daughters did not understand what menstruation is and why they menstruate. Many reported that their autistic daughters were able to understand only that it is a recurring experience that happens each month. Parent No. 5 stated, “She has less understanding. What she does understand is that it happens, and it’ll happen again.” Similarly, Parent No. 4 expressed that their autistic daughter was not going to say, “How long does it last?” or “Why does it hurt?” Parent No. 2 reported, “I think that she has trouble understanding certain concepts.” Similarly, Parent No. 3 expressed, “My daughter in particular is indifferent to it. She doesn’t understand to embrace it or not. To her, it just is.” Three of the eight parents shared a similar thought in which their daughters did not understand and were unable to express the pain and discomfort that come with menstruation. Parent No. 3 explained this theme well by providing a specific example: “So gradually she started wearing a pad all month around. And that’s currently what she does. She does not want to be caught unprotected.” As a result of this lack of understanding, parents reported being more involved in their daughters’ overall management of menstruation.
Menstrual Product Preferences: “Using a Tampon Was Not Going to Be an Option”
All eight parents unanimously opted for pads over tampons for their autistic daughters. Parent No. 3 stated that “using a tampon was not going to be an option.” Parent No. 4 discussed how their daughter was not at a level at which she would be able to use a tampon and therefore made the decision to just “use pads.” Pads are considered to be less intrusive and easier to manage. However, three parents reported having begun using period underwear, which is absorbent underwear that can be worn during menstruation in place of a pad or tampon as another method of managing their daughters’ menstrual hygiene. Parent No. 2 emphasized, “Neither of my daughters with autism will go near tampons.” Because these daughters relied on their parents to manage their menstrual cycles, pads were easier, for not only them but also for their parents.
Parental Feelings About Managing Menstruation: “I Had to Figure Out on My Own How to Figure This Out for Her”
In the interviews, all eight parents illuminated rather intense feelings about managing menstruation with their autistic daughters. Parent No. 7 explained, “It’s a very horrible place to be, not knowing why your kid is crying, and it really angers me because I don’t know what she goes through.” Parent No. 3 elaborated, “I always assumed that it would be completely on me because it’s something very personal. I had to figure out on my own how to figure this out for her.” A common realization was made by Parent No. 6: “I didn’t realize how much more my daughter needed help than other kids.” Parent No. 8 provided an in-depth explanation about her experience: It was definitely more difficult with my child. Just because of autism. And there’s so many needs. I mean, you don’t even know what to do first. You don’t know what to address first because you have physical things going on. You have sensory things going on, and then you have physiological things going on. It’s an onion. Layer after layer after layer.
These parent excerpts clearly illustrate the inherent stress encountered while assisting their autistic adolescents manage the inevitability of the menstruation process.
Strategies That Worked for Managing Menstruation: Calendars, Social Stories, Visuals, and Routines
Parents described several strategies that proved to be beneficial for their autistic daughters in addressing menstruation and MHM. All eight parents reported using a calendar or an app to track their daughters’ periods. Parent No. 1 explained, “We do keep track of it on a calendar,” and Parent No. 8 reported, “There was a lot of looking at a calendar.” Parents No. 2 and No. 3 discussed the use of apps for their daughters. For example, Parent No. 2 explained, “We found the Clue app. It’s like an electronic calendar. You write down when you get your period. You can even write down how heavy it was, how light it was.”
All eight parents reported using either social stories or visual aids with their autistic daughters. For example, Parent No. 8 stated, “I just used social stories.” Both Parent No. 3 and Parent No. 8 explained that they both even created their own social stories to help their daughters. Visual aids, including the Picture Exchange Communication System (Bondy & Frost, 2001) and visual schedules, were also reported to be highly beneficial by parents to address menstruation and MHM. Parent No. 3 explained, “She’s really big on visuals,” and Parent No. 7 emphasized “My daughter is visual. She has to see it.”
Finally, many parents reported the importance of routines for their autistic daughters when dealing with menstruation and MHM. Routines for autistic individuals are important because the constant and ever-changing interaction of everyday life can be overwhelming. It is important to establish consistent routines because it helps instill confidence and security in their actions and understanding of situations. Parent No. 3 explained that there is a “need for routine” during the menstrual cycle. Parent No. 5 verbalized, “We have it down to such a manageable routine. And that’s the key word—routine.”
Discussion
The eight parent interviews conducted in this study revealed seven key themes related to addressing menstruation and MHM with their autistic daughters. The identified themes provide valuable insight into parents’ experiences, enhancing the understanding of how ASD affects menstruation management. Only a relatively sparse number of studies have addressed ASD and menstruation, resulting in limited opportunities to make direct comparisons with previous research. This further highlights the importance of this study and its aim of expanding knowledge in this area.
This study emphasized the reality that the menstrual education process for autistic individuals primarily falls on parents. This responsibility comes with a level of stress and uncertainty about how to best handle this process according to their daughters’ unique challenges. Regardless of functional level, all of the daughters discussed in this study required some level of support in menstrual management because of cognitive, motor, or sensory needs, all of which are characteristic of ASD. This is consistent with the findings of previous studies that have highlighted the increased difficulty that individuals with disabilities have with menstrual management (Quint et al., 2016; Steward et al., 2018; Wilbur et al., 2019).
This study also identified a variety of strategies for managing menstruation that parents found to be helpful. Pads were the menstrual product of choice for all the parents in this study, as in other studies, because they were found to be easier to manage than tampons (Chou & Lu, 2012). Seven of the eight participants in this study stated that social stories or visual aids, such as calendars, promoted ease of management of their daughters’ menstrual cycles, a finding also noted by Klett and Turan (2012). This reaffirms the enduring relevance and effectiveness of these educational strategies in supporting parents and their daughters in navigating menstruation. However, parents in this study still expressed that there was an overall lack of resources, as well as a lack of knowledge on the part of women’s health providers available to them, as they tried to meet the unique needs of their daughters (Chou & Lu, 2012; Cridland et al., 2014; Cummins et al., 2020; Holmes et al., 2019; Mademtzi et al., 2018). Overall, these findings indicate that parents play an integral role in their daughter’s menstrual management.
Even though menstruation and MHM is within the scope of occupational therapy, not a single parent in our study reported utilizing, or even being aware of, occupational therapy as a resource with this process. All parents reported that their autistic daughters had experienced menarche between ages 11 and 14. Occupational therapy is a crucial service for autistic individuals during adolescence because it supports the development of essential life skills, emotion regulation, and sensory processing. This support helps them navigate the complex changes of puberty, including managing personal care tasks and social interactions and adapting to new challenges in school and daily life (AOTA, 2022).
Occupational therapy practitioners may not be involved in menstruation support for autistic adolescents because of the limited literature on evidence-based practices, coupled with a focus on other areas of intervention, such as social skills training, sensory processing, or fine motor skills. This is consistent with Larson et al.’s (2021) study, which found that less than 26% (n = 71) of occupational therapy practitioners working with autistic adolescents addressed menstruation. Occupational therapy practitioners who work with autistic adolescents and their families need to be proactive with respect to having conversations about menstruation and MHM with parents and caregivers in a timely manner. An enhanced understanding of parents’ experiences with and knowledge about their autistic children may further promote the client-centered care that is necessary to guide or coach parents through the process of menstruation. Increased studies about all facets of personal health education for autistic adolescents will allow occupational therapy practitioners to create relevant resources and a menu of personalized strategies that are based on empirical evidence.
There is a place for occupational therapy in the world of women’s health and disabilities that can help bridge the gap between medical professionals who understand reproductive health but not how to address it for autistic individuals. Occupational therapy has a distinct role in working with autistic individuals that could greatly assist in the enhanced participation and performance of MHM.
Limitations
We recruited participants from a small area in Pennsylvania, with the exception of one participant, who was from Virginia, through convenience and snowball sampling. On top of the extensive amount of time snowball sampling takes, there were time constraints that limited our ability to recruit and interview more participants. Furthermore, the sample size of this study was small, with eight participants, resulting in a decreased ability to generalize the findings to other populations. Another limitation is the absence of a comparison group of typically developing children, which restricts the ability to draw direct comparisons and assess differences in parents’ experiences.
Implications for Occupational Therapy Practice
The findings of this study have the following implications for occupational therapy: ▪ Occupational therapy has a role in health promotion and well-being (Reitz et al., 2020). Practitioners are well suited to support women’s health needs for individuals with autism. This includes educating health care providers on the unique needs of individuals with autism as related to menstruation. ▪ Occupational therapy practitioners may collaborate with caregivers and families of autistic individuals to help navigate the complexities of menstruation. Supporting, guiding, and educating caregivers all lie within the role of occupational therapy. ▪ Occupational therapy practitioners may demonstrate the distinct value and holistic nature of occupational therapy by addressing menstruation and MHM for autistic individuals through providing individualized, client-centered, and occupation-based interventions. Occupational therapy practitioners must consider the sensory sensitivities, barriers in communication, self-regulation needs, and difficulties with ADLs experienced by autistic individuals. ▪ Occupational therapy plays a vital role in transition services for autistic individuals and their families as it relates to menstruation and MHM by assisting them in navigating areas such as independent living skills, government assistance programs, and community resources as these individuals transition from childhood to adulthood. ▪ Further research is crucial to develop evidence-based interventions in the area of menstruation for autistic individuals and to advance the occupational therapy profession.
Conclusion
Menstruation and MHM for autistic individuals is underrepresented in the literature, especially with respect to occupational therapy. This study highlights the experiences parents encounter when addressing menstruation and MHM with their autistic daughters. Furthermore, a lack of understanding of this topic extends into the home, without any or minimal external resources from health professionals. Parents are often left alone to create their own strategies, through trial and error, to find what works best for their autistic daughters and the family. Spreading awareness about this topic is integral to help make the transition from childhood to adolescence within this population more manageable for both parents and their daughters. Understanding the common experiences of this population during menstruation is necessary to guide and inform future occupational therapy practice with autistic individuals on menstruation and MHM.
Footnotes
Appendix: Interview Items
Describe the transition from childhood to adolescence your child experienced (hormonal, physical, etc.). How old was your child when they first began their menstrual cycle? Tell me about this experience. Tell me about the resources available to both you and your child when educating your child on menstruation. Anything specific to menstruation and autism? Tell me about your role in the management of your child’s menstruation cycle. Are there traits unique to autism that positively or negatively affect your child’s ability to manage their menstrual cycles; for example, sensory needs or fine motor skills? Tell me about how your child perceived this process. Describe this experience compared with your other children who have experienced menstruation (if applicable). Are there any resources or strategies on menstruation and menstrual hygiene management that you would recommend for other caregivers of children with autism?