We spoke to Robyn Steward, author of ‘The Autism-Friendly Guide to Periods’, to ask her about the specific challenges of, and top tips for, managing a period when you have autism. The full interview is available here- Autism Friendly Periods full interview
Note– Robyn’s book is the one Menstrual Matters recommends for all young people about to start their periods- it is the most straight-forward, comprehensive, and accessible guide we have found.
Having conducted a survey of 100 other autistic people who menstruate, Robyn found that the thing people worried about most was period pain:
“Autistic people can be hyper-sensitive to senses like sight, taste, touch and so on; or hypo-sensitive, meaning that they don’t take in enough information. Of course, within the autism community, there are lots of different sensory experiences. Sensory issues can vary according to different environments, different mental states and different senses. However, at least anecdotally, autistic people seem to be more sensitive to period pain… One theory to explain this is that lots of autistic people experience anxiety. Anxiety causes your muscles to tense up which, in turn, makes you more sensitive to pain.”
Robyn suggests that the best way to deal with such anxieties is to try to learn more about the menstrual cycle and why these changes occur: “If you know why it hurts, how it will affect your daily life and what you can do about it, then you can make a plan.” This is why Robyn’s book outlines all the bodily changes happening during the menstrual cycle and how to manage them.
[Note– Period pain is effectively reduced by the use of anti-inflammatory medication like ibuprofen, especially if taken daily from 2 days before menstruation is expected to begin. If pain is regularly severe and does not respond to this type of medication, please seek medical advice; you may have an underlying health issue such as endometriosis, fibroids, Pelvic Inflammatory Disease, or an infection. See our symptom-specific page for additional ways to alleviate period pain.]
Another issue that autistic people may experience is difficulty in executive functioning. Robyn explained: “Executive functioning is working out what to do and in what order to do it – for example, do you buy your milk before you go to the cinema or do you go to the cinema and buy your milk on your way home? If you go to the cinema first, then you have to make sure that you time your cinema trip for when the shops will be open.”
Periods obviously require quite a bit of executive functioning. You need to learn the sequence of changing a pad or a tampon and then remember to change them. Plus, if you do not track them, starting your period can also be a bit unpredictable. Robyn told us that kind of uncertainty can be difficult for autistic people to deal with:
“When you find blood in your knickers, you don’t have a lot of time to think about what you’re going to do about it. … Thinking about what to do before you get your period, making a clear plan and making sure all the supplies are there for when you need them can help you feel more prepared.”
Robyn’s book carefully outlines the process of using and changing different types of a menstrual product, with wonderful photos to help readers get a realistic understanding of what menstrual fluid and these products look like.
[Note– Tracking your cycle for a few months will help you to predict when menstruation will start by identifying your personal typical cycle length range and the changes you experience in the days beforehand.]
There is a lot of information that you need to learn to be able to effectively manage your period. This can be quite overwhelming for autistic people: “While most people end up learning how to put a pad on when they get a period, autistic people often need to practice before. For them, it’s not just about the learning to do something new; it’s also all the sensory experiences, the noises, the sounds, the smells.”
It’s important, therefore, to take your time when learning how to manage your period. It might take you a couple of cycles to get into a routine and to learn how to use different period management products. She suggested that, with any period management product, you try using it at home first, maybe at the weekend when you’re not anxious or under any time pressure and try not to be hard on yourself if you don’t get it right the first time.
For some autistic people, the sight of blood when getting a period, can be very frightening. Robyn told us, “autistic people only really work with the information that they’re given. If up to that point, the only time they’ve seen blood is when they have fallen over or if they’ve been ill, they will associate blood with being broken or damaged in some way”.
But, when you have a period, there is nothing wrong with you; it’s just part of what your body does. Robyn has a helpful analogy for this: “Your body produces some things that are supposed to come out of it. For example, the saliva or spit in your mouth is made to keep your mouth clean and help you swallow. When you brush your teeth, you spit out some saliva with the toothpaste.” In the same way, wombs make a lining that comes out of the body regularly when you have a period. When you spit out saliva or have a period, you are not being harmed in any way so there is no need to be scared.
Equally, you don’t need to be embarrassed if you get blood on something while you are on your period. As Robyn says, “periods are a normal part of everyday life and leaking is something that happens to everyone so you don’t need to be embarrassed”. It is very easy to wash blood out of clothing or sheets but, if leaking is something that happens regularly, Robyn suggests using a back-up product. For example, you could wear a menstrual cup or tampon together with a cloth pad or period underwear.
Whilst someone might not necessarily be comfortable walking down the street and shouting about periods, it’s important that people who menstruate don’t feel too shy or embarrassed to talk about them with others. Robyn told us that this is especially the case for autistic people:
“Looking at the research data from my survey, it seemed like it was really important for people to be able to have someone that they could talk to and ask information from. Otherwise, they got information from their peers who were also ill-informed and things could get confused. For example, one of the research participants said that she tried to put a tampon up her bum because somebody had used the word bum instead of vagina when they were telling her how to use a tampon.”
It is important to find people in your life that would be happy to talk about periods with you, perhaps in their home or at the doctor’s office. Robyn recommended, particularly for autistic people, that you talk about it with someone who has had periods for a while and can help you work out how best to manage your concerns.
Note– If you experience any cyclical symptoms that stop you from doing normal daily activities, please seek medical advice, you may have an underlying health issue.
Robyn’s research on autism and menstruation is outlined in this journal article- S Bargiela,R Steward, W Mandy, Journal of Autism and Developmental Disorders October 2016, Volume 46, Issue 10, pp 3281–3294 and is free to view here- https://link.springer.com/article/10.1007/s10803-016-2872-8
Robyn also wrote a brilliant book about how to stay safe as a young woman with autism-‘The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum‘ – which is also £9.99 and available to buy online.
Interview and blog by Tsara Crosfill-Morton, Menstrual Matters Research Intern.
Crosfill-Morton, T. (2020, April 22) ‘Managing your periods when you have autism’ Menstrual Matters Blog. Retrieved from https://www.menstrual-matters.com/blog/autism/ on [insert date accessed].