Individuals with autism experience unique challenges related to accessing high quality health care. These challenges include increased barriers to accessing providers, higher unmet needs, and lower satisfaction with care than individuals without autism (23, 24). Current research suggests that health care experiences among individuals with autism are impacted by the complexity of their physical and mental health care needs (25) as well as a lack of training among primary and specialty health care providers related to autism (26, 27). As with other populations, difficulties in accessing health care increase as needs become more complex.

Health care needs among individuals with autism are uniquely exacerbated among autistic women, largely due to the lack of existing research on the experiences of women with autism. Due to the higher prevalence of autism diagnoses in men than in women, autism research has primarily focused on symptom presentation and experiences among autistic men and boys (28). Current research suggests that women have been historically misdiagnosed or received their diagnosis later in life than men due to a lack of understanding and consensus on the presentation of autism among women (28). Women without co-occurring intellectual disability are especially at risk for missed or late diagnosis; Zener (29) described that common paths to diagnosis for this population include seeking diagnosis after the diagnosis of a family member (i.e., their child), identifying traits in other autistic women, and coming to the diagnosis as they are seeking support for mental health and burnout (29).

Traditionally thought to occur predominantly in males (30–32) current research suggests that autism occurs in females more often than previously thought and that the disorder may present differently in affected females (33, 34). Due to the lack of existing research focused on autistic women, little is known about health care needs specific to this population. As the prevalence of women diagnosed with autism increases, research is needed to better understand symptomology, lived experiences, and intervention approaches so that providers are equipped to deliver effective care for health issues specific to autistic women. Specifically, research is needed to support autistic women as they experience health care needs associated with physical experiences unique to females, including menstruation, pregnancy and childbirth, and menopause (14). These conditions, common among females, present complex challenges for physical and mental health that are understudied among the autistic population.

Many women do not receive adequate education or care for menopause related symptoms (42), resulting in limited knowledge about the transition and ultimately leaving them unprepared to manage associated physical and psychological changes. Existing research indicates that over 80% of women report receiving no formal menopause education and that mid-life women rely primarily on informal sources like websites and friends for information (43). When women do try to receive medical care, they often report being left untreated (42). One recent study of health records revealed that 40% of women included in the study did not receive a prescription for menopausal symptoms, and 13% received no treatment at all (42). Further exacerbating the lack of support, only about one-third of OB/GYNs report receiving training in menopause management during their residency (44).

For autistic women, menopause may be especially challenging given the defining characteristics of autism; communication difficulties may further impede access to high quality medical care for menopause related issues, social challenges may impact access to support systems demonstrated as important for menopausal women (11), and sensory processing issues that commonly co-occur with autism and further increase challenges related to interoceptive awareness that is common both for individuals with autism and in women experiencing menopause (45). Specifically, autistic women experiencing perimenopause and menopause are likely unable to identify the source of their symptoms, and their ability to explain their physical sensations may be further exacerbated by difficulties in communication as well as challenges in accessing high-quality health care generally (2).

Existing research examining the needs and experiences of autistic women is limited, particularly in health care issues specific to women's health. Menopause is a transitional health experience shared by nearly all women, and yet little is known about the needs of autistic women navigating menopause. While further research is needed, the limited existing research provides some understanding of lived experiences, symptomology, and current interventions; each of these areas of research is summarized below and should inform future research and approaches to care.

The presentation of menopausal symptoms among autistic women appears to be more intense and complex than what is experienced by their neurotypical counterparts (46). Symptoms reported often include hot flashes, amplified sensory sensitivities (i.e., atypical sensory experience (47), increased emotional volatility, behavioral challenges, sleep challenges, and cognitive impairments related to focus, memory, and decision making (45, 48, 49). Often, a regression or intensification of common autistic characteristics associated with IA (e.g., intolerance to change and heightened sensitivity to sensory input) accompanied these symptoms, further exacerbating daily functioning during menopause (45, 48, 49). Rynkiewicz et al. (50) provide an illustrative example of the unique challenges of menopausal autistic women in their case study of a 53-year-old, white, autistic woman who participated in a pilot trial of a multi-component telehealth intervention. At the beginning of the intervention, the participant reported experiencing significantly higher levels of sensory sensitivity and more sensory avoidance compared to general population norms, as measured by the Adult/Adolescent Sensory Profile (AASP). Menopausal Specific Quality of Life Questionnaire scores revealed that overall menopause symptom scores were moderately to severely bothersome, with vasomotor, psychological, and physical symptoms rated as most bothersome. A combination of Hormone Replacement Therapy (HRT), mindfulness meditation, and treatment for a previously undiagnosed pituitary disorder significantly improved vasomotor symptoms, with more limited improvement in psychological and sexual domains (50).

Women with autism describe common menopausal symptoms as particularly disruptive due to pre-existing sensory and regulatory challenges (2). Menopausal symptoms often mirror, overlap with, or intensify existing autism symptoms, characteristics, and co-occurring diagnoses, making it difficult for individuals to distinguish whether their experiences were related to autism or menopause (2). This difficulty is compounded by a widespread lack of understanding within the healthcare community regarding the interplay between autism and menopause (2). Hormonal fluctuations associated with menopause frequently lead to unpredictable physical, mental, and emotional states, contributing to confusion about the origin of these changes and increasing daily distress (49).

Emergent physical health difficulties during this time include fatigue and hot flashes, which are frequently caused by the hormonal imbalances characteristic of the menopausal transition (51). Midlife women also commonly report sleep disturbance, which is associated with both menopause and an autism diagnosis (2). The interplay of hormonal imbalances and neurodivergence, when layered with sensory sensitivities and communication difficulties, increases challenges associated with seeking high-quality care and indicates a need for interdisciplinary care models (e.g., Medical Home) for supporting autistic women in transition (45).

Menopause exacerbates mental health challenges commonly experienced by autistic individuals, including anxiety and depression, which are reported to co-occur at higher prevalence in autistic populations than in neurotypical populations and appear to be especially common in autistic women (8). Ongoing mental health symptoms are heightened during menopause and are often marked by a notable decline in overall mental well-being (52). This decline can be linked to both internal factors, such as hormone-driven mood instability, and external stressors, including inadequate peer and medical support (48). Mental health difficulties during menopause are further intensified by challenges in articulating internal experiences, particularly among individuals who lack a robust emotional vocabulary, are non-speaking, or were undiagnosed when perimenopausal symptoms began (45). Current literature suggests that building a framework to help individuals understand the intersectionality of autism and menopause would be beneficial in contextualizing both lifelong struggles and current levels of distress (2). The formal guidance of a medical practitioner, coupled with peer support, may offer meaningful relief and validation for this population.

Menopause also significantly affects behavioral health among this population, particularly in relation to executive functioning, daily regulation, and routine (2). In addition to exacerbating existing challenging behaviors, menopause may also lead to increased difficulties with time management, task initiation and completion, social interaction, and flexibility among autistic women (45, 53). The addition of menopause to an already dysregulated baseline often results in a regression of functioning (2). For example, one participant in a qualitative study reflected on her experience of menopause: “It seems like we ignored a lot of our traits or just pushed through and didn't really recognize them…emotional regulation has always been an issue…just feels like everything is amplified now” (49). Hormonal fluctuations and intensified disruptions in emotional control contribute to behaviors being misinterpreted or pathologized by a medical community that lacks autism-informed training (54) and approaches specific to this life stage. It is imperative that these behaviors be understood as potentially heightened expressions of existing traits, rather than newly emergent issues. Highlighting the manifestation of behavioral dysregulation because of the distress and physiological imbalance associated with the menopausal transition is essential, as these elements are significantly intertwined and must be interpreted accordingly. For the medical community to respond effectively, strategies and supports must be developed to address the intersectional and interdisciplinary needs of this population.

Across multiple studies (2, 45, 48), autistic females describe the menopausal transition as a particularly isolating and disorienting experience. Their symptom experiences of menopause are often intensified by preexisting difficulties related to sensory processing and IA, executive functioning, and emotion regulation. A recurring theme among individuals seeking help with the menopausal transition was the lack of accessible, autism-informed educational and healthcare resources (2, 45). The convergence of lifelong experiences with autism-related symptoms, whether formally diagnosed or not, further compounded the confusion and distress surrounding the menopausal transition. The masking of symptoms, along with the lack of healthcare and educational approaches informed by the experiences of autistic females, resulted in many women feeling dismissed or misunderstood by the healthcare community. Multiple studies (2, 55) emphasized the profound sense of invisibility felt by these individuals, which was underscored by how the silence around autistic menopausal experiences has been historically reinforced by a lack of research and understanding.