Although a discussion about neurotypical people’s period cycles has started in recent years, the same can’t be said for those on the autism spectrum. Many feel unheard and uninformed, with almost half (49%) of autistic people reported not understanding their period, a third (30%) said it takes as long as four-to-five years to learn to manage it, over half (59%) aren’t comfortable enough to talk about it and 16% had to teach themselves about the cycle.

Intimate wellness brand, INTIMINA, has released a report which aims to breakdown the stigma around autism and periods. Whilst empowering and informing people about the challenges that those on the autism spectrum face and offering advice from experts, Psychotherapist Steph Jones (MBACP) and Consultant Obstetrician and Gynaecologist Dr Shree Datta, on how to cope.

On average it takes four-to-five years for almost a third (30%) of autistic people to learn how to manage their period, compared to just one year for a massive 38% of neurotypical people. Reasons for this do vary but this new research shows that it could be down to autistic people having different experiences when it comes to their senses, mental health, physical effects, communication, and knowledge of the reproductive system and period products.

Sensory 

Hyper or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment, such as smelling or touching of objects is something that most autistic people experience. When asked if they notice the scents in menstrual products like tampons, menstrual cups and pads, 70% said yes, 66% said that it bothers them and 26% flagged odours as one of the main issues when they are on their period.

Mental Health & Physical Effects  

Most people with periods struggle with a whole range of mental and physical issues during the cycle, including bloating, depression, anxiety, headaches, back pain, cramps, cravings, tender and swollen breasts, fatigue and insomnia.

Almost all participants (96%) said that they experience emotional changes during a period, with over a third (38%) confirming that mood changes were in their top three worries that they had before their period.

Alongside mood changes, 42% of autistic participants said that they were concerned about heavy bleeding during their period and 42% said they were most worried about period cramps.

One of the autistic people who contributed a comment in the report went as far as to say that they suffered with “waves of depression, climbing anxiety, panic attacks and random crying outbursts” during their period.

Communication

The findings show that 41% of autistic people don’t feel confident talking to close friends or family about their period with another 18% feeling very unconfident. This is in contrast to the neurotypical sample where 74% said they felt either confident or very confident. Perhaps a struggle with communication is what has led 16% of autistic people to teaching themselves about periods.

Knowledge of the female reproductive system

Almost half (49%) of autistic people don’t understand their period cycle completely and when asked to identify the cervix on an image of the female reproductive system, a massive 39% of people on the autism spectrum failed to identify it correctly.

Using period products

Four out of five (83%) autistic people find period products difficult to use, with a third (34%) citing using sanitary products as the third biggest concern when it comes to their period. However almost a quarter (24%) of autistic people said that they prefer to use menstrual cups.

Psychotherapist, Steph Jones (MBACP), said: “Those on the autism spectrum, like myself, might struggle to talk about periods because they feel ashamed, or it might be connected to the social challenges experienced by many autistic people. For example, not asking for help because it leaves individuals open to the possibility of being dismissed, humiliated or invalidated.

“It’s also extremely common to experience some feelings of depression and anxiety just before a period starts. To help with this I would recommend keeping track of moods to determine whether they seem related to hormonal changes or reveal an underlying issue. Tracking will also help reduce the anxiety of not knowing when you are due to start your period. An easy way to track is to note it down in a journal or use an app to follow your cycle.”

Consultant Obstetrician and Gynaecologist for INTIMINA, Dr Shree Datta, adds: “Periods are the most natural thing in the world, with most people experiencing them, so always ask for advice because periods are part of our health cycle, not something anyone should feel embarrassed about.

“Don’t be shy to approach a doctor if simple measures such as hot water bottles, gentle exercise and pain relief do not help manage period pains. The next step may be being referred to a gynaecologist but remember that doctors help people who have heavy or painful periods every day of the week, so go and see them early if there’s a problem.”

Danela Zagar from INTIMINA, the brand behind the report, comments: “We’re on a mission to offer advice and support to everyone, no matter your background. As part of this, we have commissioned this research to help the voices of those on the autism spectrum be heard, help to understand the challenges that they face and overcome the stigma around this subject. We really hope that the report and advice within it helps many people on the autism spectrum and their families.”

As part of INTIMINA’s mission to break the taboo when it comes to talking about issues surrounding autism, the brand has made a donation to the National Autistic Society, which is the UK’s leading charity for autistic people and their families. They’ve spent decades working to provide support, guidance and advice to help create a society that works for autistic people.