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You are here: Home > Midlife matters > MM selected articles > Autistic Menopause: when it all gets too muchTuesday 23 April 2024   

Autistic Menopause: when it all gets too much

01-Dec-2023 Autistic Menopause: when it all gets too much

For some, menopause is a minor inconvenience. For others, it is cataclysmic and can bring about life-changing revelations. Research suggests that the upheaval of menopause can unmask undiagnosed neurodivergence - that is, undiagnosed autism and / or ADHD. Rose Matthews (Autism Researcher) and Dr Rachel Moseley (Bournemouth University) help us to understand the situation.

Rose's experience

To help put things into context, Rose shares what happened to her at peri-menopause.

When I was 57, I had the kind of breakdown which was like the engine of a car cutting out. I glided into the side of the road and could not get going again.

I'd just about been getting by - albeit a bit battered and bruised by misunderstandings and muddles of various kinds - but during peri-menopause my difficulties became more extreme. Although I knew menopause could be disruptive, I thought this was in quite specific ways (hot flushes and changes in menstrual bleeding) and that it wouldn't happen until my 50s. I had no idea that the menopausal transition could induce mental confusion, palpitations, panic attacks, impulsivity, joint pain, dry eyes, dry everything.

I didn't expect menopause to disrupt my work, my intimate relationships, or my mental health. Nor did I know that it would take more than two decades and be like getting lost in a maze. I'd lose sight of who I was, get caught up in confusion and, in utter despair, feel that my life was at risk from suicide.

By my mid-50s work pressure had become intolerable. I couldn't sleep. I had almost continuous heavy menstrual bleeding. Desperate pleas for help to my GP went unheeded. They just told me how strong I was and that I'd get through it. A few months later, I was arrested after an emotional outburst and held in the police cells overnight. I went straight back to my GP seeking help. What could possibly explain this?

I was diagnosed autistic aged 58, just before I technically reached menopause. This was the turning point: the beginning of a long, slow process of recovering from the consequences of not knowing I was neurodivergent most of my life.

The research and evidence

For some, menopause is a minor inconvenience. For others it is cataclysmic and can bring about life-changing revelations.

Research suggests that the upheaval of menopause can unmask undiagnosed neurodivergence - that is, undiagnosed autism and / or ADHD and to understand this, it's important to know something about the a href='https://www.ingentaconnect.com/content/wk/yco/2022/00000035/00000002/art00003' target='_blank'>historical underdiagnosis of autism and ADHD in girls, women and people assigned female at birth. In life, this can lead to 'a lifelong feeling of not fitting in and being out of sync with things'.

Rose Matthews and Rachel Moseley

Autism and ADHD are differences which encompass how a person thinks, feels, communicates and experiences the world. They were first identified in male cases and, for many years, were presumed only to affect boys and men.

Between the 1960s and the 1990s, autism and ADHD were very often overlooked in female-presenting children with good intellectual capabilities. While neurodivergent boys tend to show more obvious, externalised signs that they are struggling, autistic girls and those with ADHD are often 'quiet, well-behaved girls', and adept mimics of the social behaviour of others. Keen to fit in and hide their difference, they often adopt a passive, people-pleasing style which can leave them vulnerable to abuse.

Autistic people who grew up undiagnosed in this period have been called 'the lost generation'. Their lives, and those of undiagnosed adults with ADHD, may be a catalogue of struggles in education, employment, and relationships. Consequently, they often feel a deep sense of deficiency or brokenness, blaming themselves for perceived failures. Given the deleterious impact of chronic stress on health, it is unsurprising that these individuals may be known to their doctors as 'heart-sink patients', suffering chronic physical and mental illness and / or 'unrelenting' suicidality.

'In your everyday life, just to appear 'normal' is bad enough, but when [the menopause] happens, it all gets too much'
(research participant)

Such individuals function in the world with the help of well-practised coping skills for everyday living and social relationships. It seems that menopause shatters this delicate balance.

Across a number of studies, autistic people described the far-ranging impacts of menopause. Physical symptoms like hot flushes affected their confidence and self-esteem (already typically low) and disrupted their sleep. This, in addition to affecting mental health, was also linked to 'crushing tiredness' and impaired memory, planning and organisational skills - things that are already difficult for autistic people. Autistic people also typically struggle with regulating their emotions: emotions become even more extreme and uncontrollable at menopause, people finding it much harder to cope with stress and uncertainty. For some, this manifests in extreme signs of distress, including outbursts, self-harm and suicide attempts.

While menopause is known to have physical, cognitive and emotional symptoms, neurodivergent people may experience additional changes that aren't typically listed in menopause symptom lists. This is because hormonal changes, including menopause, appear to exacerbate or exaggerate common difficulties associated with ADHD and autism. For example, sensitivity to light, sound, touch and smells may take on 'dominating, incredible, awful, debilitating' proportions. Interacting with others, already exhausting, becomes that much harder, with many unable to uphold the social mask they'd perfected. The 'hyperfocus' of autism and ADHD becomes a liability where once it was an asset for certain types of work.

'I've stopped being able to cope with my life, the life I was able to cope with before'
(research participant)

Altogether, the impacts of menopause are extensive: loss of jobs, falling into debt, lost relationships, becoming more or fully-dependent on partners and ageing parents. While we do not presently know if menopause is any easier for neurodivergent people diagnosed as children, participants across our studies suggested that being unaware of their neurodivergence made menopause harder and more confusing. Participants in our studies went into menopause with very little awareness of what to expect and many struggled to get help from doctors, even at crisis point.

Our existing research highlights the need for healthcare professionals to pay attention to this critical life-stage - in relation to diagnosed autistic people and ADHD'ers, and in relation to those individuals who have just always seemed to struggle. For this latter group, our research suggests that finally realising a neurodivergent identity, even while it might not lead to material benefits, can lead to greater self-compassion, self-empowerment and finding their 'tribe': others who understand.

You can read our published work on autistic menopause here and here. You can find resources related to menopause, to healthcare interactions, and resources for professionals, on this page.

The authors are currently doing research with the Bridging the Silos: Autistic Menopause Study. Please visit the project website for the latest news on our studies discussing autistic experiences of menopause. There are also some free resources here that you might find useful.

Finally, if you are wondering whether you might be neurodivergent yourself, please visit the web site of Tony Attwood (a world-leading expert on autism) where he has a questionnaire.

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