Dr Annabeth Groenman is post-doctorate researcher at the University of Amsterdam. Here Annabeth discusses research that explores whether autistic people are more likely to experience premenstrual dysphoric disorder, and increased problems during menopause. 

There is a lack of evidence and knowledge around how autistic people experience menstruation and other major hormonal/reproductive events such as menopause. 

This is due to several reasons:

• autism research has long focused on children, leading to little information about autistic adults
• autism has generally been viewed as a male condition, with little research focusing on women.

More and more findings suggest that autistic people who menstruate, now or in the past, have a different experience than those who are non-autistic. Our study wanted to explore how autistic people experience these major hormonal events.  

What are major hormonal events?

Any time that involves major hormonal shifts can be classed as hormonal events – for example puberty, pregnancy and menopause. In our study we looked into two of these events, namely menstruation and menopause. 

Premenstrual dysphoric disorder (PMDD)

The week before menstruation, also called the luteal phase or sometimes the pre-menstrual syndrome (PMS) week, individuals can experience emotional and physical symptoms. These include, but are not limited to

• increased irritability
• low energy
• painful breasts. 

Five to 8% of people who menstruate, experience emotional and physical symptoms that are debilitating and affect their day to day lives. This form of PMS is called premenstrual dysphoric disorder (PMDD).  

Menopause and menopausal complaints

Menopause happens when a person has gone 12 months without menstruating. The phase before menopause – the peri-menopause – involves large fluctuations in hormones. This transitional phase can last months or years, and individuals can experience many physiological changes that cause a range of problems in the following domains (Nelson, 2008):

• physical 
• psychological
• sexual 
• social.

Why study PMDD and menopause in autistic people?

Some evidence suggests that autistic people have an increased risk of experiencing  PMDD, though prevalence rates significantly vary:

• 21% of autistic women in a study by Lever and Geurts (2016)
• 92% in a study by Obaydi and Puri (2008).

Qualitative studies have found increased difficulties for autistic people during menopause (Moseley (2020a,b). These increased difficulties appear related to an increase in menopausal symptoms, but also an increase in autistic characteristics such as sensory differences and difficulties regulating emotions.

Moreover, in non-autistic individuals, menopausal complaints are associated with increased psychiatric/psychological symptoms such as depressision and anxiety. Until this study, there was no information if this was also the case in autistic individuals.  

Outline of the methodology

Our study (Groenman et al. 2021) used a structured interview to explore prevalence of PMDD. We also used self-report questionnaires to determine menopausal symptoms, autistic characteristics and psychiatric/psychological symptom in a sample of autistic and non-autistic women. 

We tried to answer 3 questions:

1. Is there an increased prevalence of lifetime PMDD in autistic individuals?
2. Do autistic individuals experience more and/or different menopausal symptoms?
3. Is there a different relation between menopausal symptoms and psychological/psychiatric symptoms and autistic characteristics in autistic and non-autistic individuals? 

Findings

1. We found that 14.3% of autistic women and 9.5% of non-autistic women fulfilled the criteria for PMDD. This was not a statistically significantly different prevalence. 
2. Autistic women experienced higher menopausal symptoms, which was reflected in higher psychological and physical symptoms, but not issues related to urinary and or reproductive organs.. 
3. In autistic women, higher menopausal symptoms were associated with higher autistic characteristics. In non-autistic women, menopausal symptoms were associated with increased inattention, hyperactivity/impulsivity (in other words attention deficit hyperactivity disorder characteristics), and depression. 

Implications for autistic adults

We did not find an increased prevalence rate of PMDD in the autistic women sampled. However, reported prevalence rates vary so immensely (14.5%–92%) that it does appear that PMDD is something that autistic people who menstruate should be aware of. 

There are already excellent qualitative studies that suggest that autistic individuals experience more difficulties during the transition into menopause. However, our study was the first to quantitively show that autistic individuals show increased menopausal symptoms. We also showed that higher menopausal symptoms were associated with higher autistic characteristics. This is similar to the findings of qualitative studies, that autistic characteristics are stronger during the menopausal phase. 

Recommendations for further studies

Our study used validated instruments to measure both PMDD and menopausal symptoms. However, it is possible that these instruments did not identify menopausal symptoms specific to autistic individuals. Some may experience symptoms that are not reported by non-autistic individuals. 

Menopausal symptoms are associated with very bumpy hormonal fluctuations. One question that remains open is whether the increased menopausal complaints in autistic individuals have a biological cause. A different, but most likely complementary explanation, is that autistic individuals experience higher menopausal complaints due to an overall increased sensory sensitivity. This complex interplay deserves further attention, and careful thought and proper consideration should be put into designing these studies. 

Further information

Groenman, A.P et al (2021). Menstruation and menopause in autistic adults: Periods of importance? Autism Journal.