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Hitting the Pause on Menopause: Experiences of menopause for women with autism

Updated: Dec 1, 2022

BY ANNA COUGHLAN



 

Why don’t people talk about menopause?

Regardless of this being a natural and healthy part of a women’s life cycle, menopause is generally viewed as unsavory or “taboo”. Anything related to sex is considered something to keep private, while the concept of aging is not deemed desirable within Western cultures, leading women to feel exposed or embarrassed when speaking about menopause or giving them few oppertunities to speak out. This presents as a major social barrier to informing women of menopause and producing general scientific research, and even more difficult if women are neurodiverse. There are limited studies that focus on autistic women’s experiences of menopause, even though most suggest autistic women are differently affected during menopause. This could be indicative that women with autism are not having their needs met during the stressful transition of menopause.


Research suggests neurotypical women that cope best with symptoms of menopause have strong social supports, active/nonavoidant coping techniques, physical activity, optimism, and no history of psychiatric illnesses. Should this research be true for neurodiverse groups, women with autism may find it more difficult to achieve the latter due to challenges and barriers they are already facing, creating greater concerns during menopausal transitions. It makes it even more important that equal focus on resources given to neurodiverse women as neurotypical women when it comes to going through menopause. Yet, even gaining basic information can be more difficult if doctors misattribute symptoms in neurodiverse populations by brushing over specific aspects of women’s health and not addressing complex needs. For instance, misdiagnosing discomforts of menopause as something being made up in her head, or as being a result of medication problems, and not understanding communication barriers that together delay the recognition of menopause. Given this, it is shocking how few studies investigate ways autistic women can cope with and experience this transition. Regardless, let's discuss what we know so far, and where we need to go from here.

 

Neurodiverse Women’s experiences with Menopause

Like with menstruation, knowing more of what to expect can help reduce anxieties surrounding menopause. Unfortunately, literature focusing on neurodiverse females’ experiences with menopause is scarce and mainly qualitative, leaving many to get blind-sided by menopause. Majority of accounts suggest some differences compared to neurotypical women. Some predicted differences include:

  • Women with autism have more psychological and somatic menopausal complaints than neurotypical woman.

  • Increased sensory sensitivity during menopause.

  • If you are already sensitive to temperatures may be greatly influenced by hot flashes that come with menopause.

  • Possible sensitivity to new things, for instance new sensitivity to some foods1.

  • Menopause may exacerbate autistic traits and make masking or coping strategies more difficult and less effective.

  • Greater difficulty self-regulating and communicating these challenges which can put strain on relationships.

  • Mood and attention levels may change (possibly more meltdowns and inattention)1.

  • Greater anxiety, panic attacks, depression, and other mental health issues1.

  • Worries of menopause-related sleep and cognitive/health problems. This may lead to greater exhaustion and attentional deficits.

 

What more needs to happen?

Many women with autism report more research is needed that focuses on aging neurodiverse females. These include longitudinal studies needed to determine if experiences change across time and elucidate if duration and start of menopause for neurodiverse women. Furthermore, if better ways of coping with menopause are to be discovered, investigation into reasons for increased menopausal complaints among autistic women are needed, as well as addressing possible connections to hormones and sensory sensitivity. Finally, if women are to open-up about issues during menopause, medical doctors, psychologists, and researchers need to be willing to learn and listen. Many women with autism have reported negative interactions with practitioners, due to their lack of knowledge around menopause and unsatisfactory understanding and support for neurodiverse needs. This also includes making more known scientific information and support accessible, giving practical advice, and clarifying what women can expect during menopause.



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