Q&A: Optimizing the menopause transition for autistic women
Key takeaways:
- Autistic women reported heightened sensory sensitivities during menopause that disrupted daily life.
- Clinicians must provide clear, accessible information on perimenopause tailored to autistic people’s needs.
Autistic women can face unique challenges during the menopause transition, especially when it comes to navigating sensory challenges and interactions with clinicians as they seek to address their symptoms.
Data from a recent qualitative study suggest there is a need for specialized health care training to recognize and address the perimenopause-related needs of autistic adults, as well as a need for autism-friendly education materials, according to Julia L. Cusano, PhD, MSW, assistant research professor at the Center for Research on Ending Violence at The Rutgers School of Social Work.
“There was a huge gap regarding how autistic people in the United States navigate menopause, particularly in terms of their health care experience,” Cusano told Healio. “How are they getting help? Who are they talking to about this? We wanted to address this gap. We thought a great first step was to conduct interviews to provide us with firsthand accounts of these challenges, as well as insights into how health care professionals and informal sources of support can help better meet people’s needs in the U.S.”
Cusano spoke with Healio about the unique challenges menopause symptoms can bring for autistic people, how symptom dismissal or misunderstandings can lead to discontinuity of care and the need for improved education about the intersection of autism and menopause for health care professionals. Cusano and colleague’s qualitative study on the transition to menopause for autistic people was recently published in Menopause.
Healio: For autistic people, what are some new challenges that might come with perimenopause, and how might any changes impact their health and daily life?
Cusano: Perimenopause can bring a range of physical and emotional changes. What we have found is that for autistic individuals, these shifts can be uniquely challenging. One of the main reasons is because of heightened sensory sensitivities. Many participants in our study reported that symptoms such as hot flashes or night sweats intensified their existing sensory sensitivities. This made daily activities feel even more overwhelming. Sensory overload, which can already be a challenge for many autistic people, became more pronounced. This led to distress, exhaustion and difficulty engaging in social and professional settings when they did not report problems with this previously.
Healio: What led you and your colleagues to conduct this study that looked more closely at the menopause transition for autistic people?
Cusano: I worked with an amazing research team, primarily with Emily Rothman at Boston University. We were completing another study working with autistic adults, and one of the things we were talking about was that menopause research has overlooked the experience of autistic adults. This is despite the fact that we do have some emerging evidence — primarily conducted in Canada, the Netherlands and the United Kingdom —that suggests this could be a particularly challenging life stage for autistic people. These studies suggest that autistic people experience heightened menopausal symptoms, including executive function difficulties, emotional regulation and communication challenges.
Healio: After interviewing the study participants, what were the big themes you and your colleagues observed?
Cusano: The biggest themes were increased sensory sensitivity, which we keep referring to, as well as this idea of misdiagnosis. Many participants described experiencing heightened sensory challenges, but they often went unrecognized or they were misattributed to anxiety or a mental health condition by their health care professional. This led to frustration. The other issue that came up was barriers to accessing effective health care. Our participants frequently reported feeling dismissed or just unheard when discussing their symptoms. Some people were denied treatment options they specifically requested. Some struggled to find doctors who they believed were knowledgeable about autism and menopause. They felt there was no one who knew about both conditions. Some participants noted that no health care professional ever asked them if they were menopausal at an annual visit.
Another theme that came up was this idea of discontinuity of care. We had participants who talked about switching health care professionals multiple times, looking for a clinician who would take their concerns seriously. Going through insurance and trying to find a new clinician led to health care burnout. Then, there was a lack of accessible information and support.
Healio: The paper notes that many of these participants asked about hormone therapy and felt dismissed. Hot flashes could be a trigger point for a person with severe sensory issues and HT might provide some relief. Why do you think these people were not receiving the help they were asking for?
Cusano: There may be a few things at play here. Participants said they felt that clinicians had an overall hesitancy when it came to HT or they were outright dismissive. This reluctance could be influenced by longstanding misconceptions about HT safety, which still persist despite recent evidence showing it could actually be beneficial for appropriate patients. We know there is an overall lack of education about menopause in general, which could contribute to that hesitancy. What could also be happening might be a broader issue in medical decision-making. There is other evidence that has documented that there is a reluctance to prescribe HT among many different types of patient groups, but the autistic people in our study described feeling excluded from shared decision-making. Providers are not always engaging in transparent discussions about patient treatment options, even when it comes to having conversations about why HT may not be an appropriate fit. For autistic people, this is problematic and can lead to discontinuity of care. Some of this may also stem from not understanding the intersection between autism and menopause and how severe and disruptive the symptoms can be. We had several participants who said they could not work anymore.
Healio: What should OB/GYNs and menopause clinicians take away from this study?
Cusano: What I would love for clinicians to take away from this is that we must recognize that sensory symptoms are legitimate and impactful aspect of the menopause transition for autistic patients. We need to recognize that. I heard participants say that they saw several doctors, and not one said, “This could be menopause.” These extreme sensory symptoms are often not even recognized as potentially being menopause related.
We also need to listen to patient concerns and avoid dismissing their experiences or attributing their symptoms solely to mental health conditions. We need an openness to discussing treatment options, including HT, in a collaborative and transparent manner. Then, we need to do a better job of providing clear and accessible information on perimenopause that is tailored to autistic people’s needs. This means using plain language and structured explanations. Overall, we need to ensure autistic patients have consistent access to knowledgeable health care professionals who can provide that ongoing support.
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For more information:
Julia L. Cusano, PhD, MSW, can be reached at jcuasno@ssw.rutgers.edu.