Sam Galloway (BSc Psychology with Hons, Primary PGCE, MA in Education) is a late diagnosed Autistic and ADHD midlife woman. She advocates for Autistic and neurodivergent menopause as a distinct life phase that can lead to fluctuations and temporary regressions in functioning, mood and cognition.

Content note: Suicidal thoughts are mentioned in this article.

My experience of Autistic perimenopause is complex but not unique. The menopause is a life transition that is inevitable for all people with ovaries. I will soon be turning 44, and my life is still characterised and limited by hormonal fluctuations.

I was diagnosed Autistic aged 37, alongside my children’s emerging neurodivergence. This was the time when my perimenopause symptoms began to appear. My symptoms began at a younger age than is average, so my doctors didn’t take my concerns seriously when I told them I felt unstable and wanted to trial hormone replacement therapy (HRT). HRT is also known as menopausal hormone therapy (MHT). The first symptoms I noticed were extremely dry eyes and constant sensory overload. My moods became unpredictable, I would experience what I refer to as ‘The Rage’, and have more frequent meltdowns and shutdowns.

My energy was very low, and I began to develop insomnia, which also affected my mood. This impacted my whole family, and the dreams I had had for my children’s childhoods became out of reach as I had to instead focus on managing my menopausal mental health challenges.

I regressed frequently, with bouts similar to Autistic burnout, including loss of self-care and executive functioning skills. I became unable to cook family meals or wash my own hair and even had frightening episodes of forgetting how to drive or where I was going whilst driving.

My hormonal fluctuations were extreme and when they dropped they took my mood and capacity down with them. I experienced suicidal ideation and intrusive thoughts of how to end my life. When my hormone levels soared I was euphoric and felt capable of achieving anything.

I did not have the capacity to educate my family doctors on perimenopause so I looked for a private doctor to help me save my life. I was exhausted and feeling desperate. I waited months for an appointment since menopause doctors are in high demand in Aotearoa New Zealand. The Australasian Menopause Society has a database of doctors with an interest in menopausal and midlife medicine.

I was fortunate to find a trusted doctor who specialises in women’s health and has an interest in neurodivergence, perimenopause, and how they intersect. Although she is not local to me, she offers remote consultations via telephone, video calls, emails, and a secure medical consultation portal.

Under her guidance my HRT was titrated to a level that manages my mental health symptoms – the most significant of all my menopausal issues. My other symptoms have included heart palpitations, tinnitus, breast pain, vaginal atrophy, disordered eating, insomnia, lethargy, loss of energy, memory loss, slower processing and reduced cognition, bloating, weight gain, emotional dysregulation, receding hairline, reduced tolerance for sensory inputs, and many more.

My HRT regimen currently includes oestrogen gel, oestrogen patches, vaginal oestrogen cream, testosterone gel and micronised progesterone capsules. It takes a lot of executive functioning skill to remember when to use each treatment, so I use timers, reminders on my phone and establish them into my daily personal hygiene routines.

Other treatments that I have trialled to manage my autistic perimenopause are the Mirena intrauterine device (IUD or “the coil”). It was beneficial because it stopped my constant bleeding that had been ongoing for months and had been causing me distress from sensory overload. However, the Mirena also caused extreme bloating, depressed mood and never felt right for me. I now think I may have progesterone intolerance, and that using progesterone aggravates my body and mind. Yet it is essential that people with a uterus who are using oestrogen HRT also use progesterone to maintain the health of the uterine lining.

I was diagnosed with premenstrual dysphoric disorder (PMDD) recently and am now using hormone blockers to stop my own hormone production from my ovaries. This is because the rapidity of the hormonal fluctuations that occur for me in perimenopause trigger mood changes, cognitive regressions and risk of suicidal ideation. It is not the specific hormone levels that are the problem so much as the fact that they change so fast from one hour to the next. Due to hormone blockers I am now in a temporary chemical menopause state so that I do not ovulate or bleed.

I am awaiting an appointment with a gynaecologist. I am self-advocating for a hysterectomy and bilateral oopherectomy, which will mean that my uterus and ovaries are removed. This would put me into a surgical post-menopausal state. This is a procedure for PMDD patients whose extreme hormonal fluctuations are so debilitating that they put them at increased risk of suicide.

My doctor explained to me that HRT is not a replacement of the hormones. HRT provides a buffer for our own changing hormone levels, so that our bodies and minds have a more consistent baseline.

Other ways I manage my Autistic perimenopause include lifestyle changes. I have a consistent bedtime and get up at the same time every day, although I still co-sleep with my neurodivergent 10-year-old. I do two 30 minute strength training sessions at home each week with a personal trainer who is also neurodivergent and in perimenopause. I try to eat a range of plant- based meals with lots of protein sources at regular times of day. I stop eating before 7pm and don’t eat again for at least 12 hours overnight. I stay hydrated throughout the day and don’t drink caffeine after midday. I listen to yoga nidra tracks to promote rest in the daytime, and sleep stories at night to encourage deep sleep.

I ask others for support when I need it and I drop commitments if I realise that I don’t have enough energy. I have a cleaner who maintains household hygiene and I have support with food preparation as and when needed.

I write because I find it cathartic and I work hard to build community and understanding around autistic perimenopause. Advocacy is important to me and is one of my core values. I have been fortunate to be motivated by communication with research academics on the topic and by sharing insights with my online community at Divergent Menopause on Substack.

I am trying to find the motivation and cognitive capacity to start interviewing experts on my podcast and to write a book about neurodivergent menopause. In the meantime, I am focusing on preserving my mental health so I can continue to care for myself and my whānau, whilst advocating on the side.

Sam is the creator of Divergent Menopause on Substack, where she: supports others to self-advocate for their needs in Autistic perimenopause; has a growing community of readers and email newsletter subscribers; hosts her Auti Peri podcast (also available on Apple Podcasts); and offers a platform for others to share their lived experience in a regular feature called The Auti Peri Q&A Series.