Autistic people face additional menopause challenges

Menopause can be a challenging time, marked by wide-reaching hormonal, psychological, and physical changes. These changes can interact with a host of pre-existing physical and mental health issues, exacerbating them further.

Those who are autistic often report that menopause brings additional challenges, too. For some, this shift may even lead them to realise they are autistic for the first time, with symptoms becoming "too obvious to ignore."

A recent study, orchestrated by Christine Jenkins and colleagues, explores the experiences of autistic people going through menopause. Their paper, published in Neurodiversity, highlights autism-specific barriers to navigating this transitional period, highlighting practical suggestions for clinicians to better support the unique needs of neurodivergent individuals.

As well as academics, some of whom have lived experience of autism, the research team included two community researchers: individuals diagnosed with autism who take part in community activism and advocacy. They surveyed 508 participants (both formally and self-diagnosed with autism) from regions including the UK, USA, Canada, Europe, and a smaller percentage (1.6%) from the Global South. All participants had experienced some phase of menopause, from perimenopause to postmenopause.

The survey focused on participants' knowledge and expectations about menopause, including the symptoms that surprised them, whether they had felt prepared, and the sources of information they had accessed. Participants also shared their experiences with professional support and reflected on its adequacy. After analysis, the team drew out five themes.

The first focused on knowledge, information and representation. Many felt that information about menopause was severely lacking, with 52.3% reporting that their symptoms were far more intense than expected. Others reflected that conversations about the menopause are taboo in general — and that there was even less specific information about the unique challenges of autistic menopause. The lack of representation across dimensions such as neurodivergence, gender identity, culture, ethnicity, and socioeconomic status left many feeling unseen, unheard, and excluded.

The next theme explored wellbeing, with menopause "amplifying" the effects of autism. Participants described how autistic traits, such as sensory sensitivities, heightened with menopausal symptoms, resulting in overwhelming emotional and physical challenges; one participant described her "rage, anger, stress, anxiety, emotional volatility, and difficulty with emotional and physical regulation, burnout, and suicidality". For many, the emotional and sensory intensity of menopause was profoundly overwhelming and disorienting.

Yet despite the sharp increase in challenging emotions, participants also felt "stuck" due to barriers to accessing support. In this theme, participants reflected on mistrust of the medical system, citing misogyny and neuronormativity; some struggled to articulate their needs in clinical settings, while others faced dismissive or uninformed attitudes from their healthcare providers.

It wasn't only medical settings that made participants feel frustrated and misunderstood, though, as the fourth theme explored. Participants often felt alienated from others due to their autism, finding it hard to connect with neurotypical women or traditional support groups. As one participant put it: "I don't fit in well with other women, especially neurotypical women." With nobody to talk to about what she was going through, she felt even more isolated.

The final theme highlighted more positive experiences. For some, menopause acted as a turning point, helping them recognise and embrace their autism. One participant shared that menopause was "a time of remaking my identity... this made the cracks that let the light of autism out after decades of squishing it deep down." Others described menopause as liberating, freeing them from the weight of societal expectations, and simply caring less about what other people thought.

There were some other material benefits, too; namely, "no more bloody periods." This was particularly welcomed by gender diverse and non-binary participants, for whom menstruation had been difficult in both sensory and emotional terms. The end of the menstrual cycle, therefore, was liberatory.

The study underscores the urgent need for more inclusive and informed menopause support within medical settings and beyond. Tailored care, designed around the needs of autistic people, could alleviate much of the isolation and anxiety associated with menopause. Similarly, more diverse awareness campaigns could address the knowledge gaps that left many participants feeling unprepared for their symptoms.

It's also important to note the more positive elements of menopause highlighted by participants, such as liberation from social expectations and physical burdens like menstruation. For both autistic and non-autistic individuals, framing menopause as a time of potential growth and freedom may help shift the narrative, providing a more balanced perspective of this complex life stage.

Read the paper in full:
Jenkins, C. A., Moseley, R. L., Matthews, R. J., van Rensburg, M. J., Gamble-Turner, J. M., & Brady, M. J. (2024). "Struggling for Years": An international survey on Autistic experiences of menopause. Neurodiversity, 2. https://doi.org/10.1177/27546330241299366

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