Interesting article: https://pubmed.ncbi.nlm.nih.gov/38622794/ Brady et al (4)

“Gaining an appointment is . . . a Herculean feat” (UKP10).

And why “Unexpected physiological, psychological and social changes had a profound effect on participants; several described having inadequate information and support, or no support at all, and entering into a spiral of difficulty and distress in which they felt they could no longer cope” (4)

Why should we care about autism and menopause: Autistic individuals are 3x more likely to commit suicide compared to neurotypical individuals (1) (2)

Initially, when managing hormones in neurodivergent patients, everything can feel a bit overwhelming (at least, it does for me!). There are so many symptoms — it’s hard to know what’s significant — and there’s a lot of uncertainty.  But what I’ve come to realise is that in neurodivergence (ADHD, Autism, Sensory Processing Disorders), hormones are essentially on steroids. What neurotypical (NT) patients experience — multiply that for someone who is neurodivergent.  And it makes sense. Think about the principles of interoception: the over- or under-awareness of what’s going on in the body. Add in the likelihood of previous trauma from being dismissed, and the challenges with communication — and it becomes even clearer.

This study has been co-designed with autistic individuals from the outset, so providing really unique insight into challenges faced. It showed several specific difficulties faced by autistic individuals during menopause:

• Complex/Intense Symptoms: (and I would also often say ‘confusing’ – for both patient and doctor) Participants reported that symptoms were hard to figure out, had many parts and often worsened their existing autistic traits. (including increased sensory sensitivities and emotional volatility)

• Compounded Life Challenges at Midlife: eg coincided with other midlife stressors, such as career pressures, family responsibilities, and health issues (NB also high rates of late diagnosis)

• Lack of Preparedness and Information: No information. This often is because people don't know what perimenopause is, and/or the information given is not in a neuroaffirming format or something one identifies with

• Barriers to Support and Care: Participants highlighted significant obstacles in accessing appropriate healthcare, with respect to barriers in being understood and logistical challenges making an appropriate appointment

• Social Isolation and Need for Connection: Many expressed feelings of isolation during this transition. They emphasized the importance of connecting with others who shared similar experiences, highlighting the value of peer support and community understanding (this surprised me, but makes sense when I reflect on the neurodivergent community/patients I support)

So what I tend to do is:

• find out what periods mean to my patients, is the menstrual flow (from a sensory perspective) what does it feel like, physically pads/tampons, smell, pain, then cyclical symptoms. And often this even in the first instance gives a huge guide as to how to prioritise management

• then moving forward I tend to provide educaiton/advice as to what the menstrual cycle is doing. I really like the App Fitr woman (it breaks down the science with relevant symptoms at that stage of the cycle and ways to support wellbeing through cycle specific exercises and fuelling). 

• and with HRT - I tend to go slow. And often ND have more side effects. But, empowering the individual that we are going to start low, and you may not feel a difference (but if you feel side effects, that also tells us something), then we will increase up. And if one understands what the hormone is doing, they are more likely to be able to manage the symptoms. And then often symptoms improve as the body gets used to it

• I often support and describe the association of the ND with the different conditions, but resist the temptation to jump in (ie and manage the migraines, or diabetes too).  I often hang onto the symptoms described, and I am guided by the individiaul

• logistically – executive function and planning are often really challenging for those with autism.  And then factor in perimenopause/menopause.  Life is hard.  Are there ways to support these individuals more?  I try to book in ‘back ups’, and also set boundaries for email consultations.  Also, many find writing lists/planning for the appointment helpful (3).  I have open notes, and support my patients to bring a support person (or have one online), or read the transcript (I use Nabla)

Let me know if you have thoughts/experiences? PMDD occurs about 8% of the general population but 45% of those ADHDers. So it totally makes sense that perimenopause can hit and make a big impact..