Menstruation can be a scary and overwhelming experience, especially for young people on the autism spectrum.
As a woman diagnosed with Asperger’s syndrome, I know how imperative it is to provide the right information to parents and autistic young people to help alleviate some of the uncertainty surrounding menstruation.
I spent more than two years doing research and consulting with young people and a group of medical professionals in preparation for my latest book, The Autism Friendly Guide to Periods, published by Jessica Kinsley Publishers Ltd. As the first book dedicated to periods for autistic people, it provides concrete advice on what periods look and feel like and how to manage hygiene and pain. It also uses flaps and step-by-step photos of how to change pads and tampons etc.
I’ve created some tips to help prepare someone with autism for menstruation. Keep in mind no two people are alike, and you may need to alter some of the advice accordingly.
1.Period education often gets entangled with sex education, but it doesn’t have to
Children need to learn to keep their privates private. It would be short-sighted not to acknowledge that once a person starts having periods they could get pregnant. This is especially important because of the potential for unwanted pregnancy, especially in the case of abuse. That’s why teaching young people their private parts are private is so important. Please see the NSPCC PANTS resources for a good starting point on how you could approach this topic.
2. Work with a young woman’s strengths
If the person you support likes collecting facts, have them build a spreadsheet or a Talley with a list of symptoms experienced throughout the menstrual cycle so they can see how it changes over time. Be clear that you shouldn’t go asking other people for this kind of information, and they need to choose with whom they want to share this information.
You can use social stories/comic strip conversations, photos, pictures, text, spider diagram, audio or whatever communication tool is preferred when they are stressed (i.e., when calm the preferred method of communication might be different), to create a step by step guides for reference.
Be sure to create realistic resources. As part of the research of my book, I did a photoshoot using water, food coloring, and jam to simulate what a period looks like. You could do this either with the young person or through taking photos, so she knows what to expect. Be sure to explain a little blood goes a long way and that during a period people lose 40-120ml.
You can illustrate this by pouring teaspoons of water with food coloring on a pad, and you’ll find it spreads out and looks like much more then you put on. Also explain that if you get blood on clothing, bedding, etc., that a bit of salt and a cold damp cloth will get the stain out.
3. Things to consider if gender or growing up is an issue
Some young people feel they are not ready to grow up and may have the interests of a much younger child, or perhaps not identify as a girl. When you teach a person about periods, try to focus on it as being a bodily function, that it is part of a cycle their body will go through until they are much older. Also, it’s worth noting that having a period doesn’t make you a woman (since there are a lot of women who do not have periods, for example, a medical condition or due to a medication).
4. Teach that a period is just one part of the menstrual cycle
Be sure to explain each part of the menstrual cycle, and its effect on emotional and physical states, not just the period itself.
5. Use the proper words for body parts
Euphemisms will not help most literal thinkers. It’s important a young people can identify their body parts, so knowing you have a vagina (for blood and womb lining to come out), anus (for poo to come out) and a urethra (for urine to come out), are vital facts. In my research, some people told me they had heard you put a tampon in your bum; this resulted in a woman trying to put a tampon in her anus which was painful.
6. Offer alternatives to tampons and pads
When I asked autistic people about their experiences with periods, many told me that alternatives to tampons and pads were vital for managing sensory input. These alternatives can include menstrual cloths/pads (which are washable and customizable including making the top fabric their favorite TV characters etc.), period underwear(boyshorts/panties) and menstrual cups. Menstrual cups are small cups made from silicone, TPE or latex (like a flexible egg cup) and placed inside the vagina to catch the blood and womb lining.
It can be helpful to start early with period underwear and cloth panty liners before periods arrive since period underwear doesn’t feel that much different (if at all) to other underwear. You can also make or buy cloth/washable pantyliners or cloth pads that have snaps (poppers) to attach to underwear so they can be taken off without a loud noise and placed in a wet bag (small waterproof bag which can come in many designs) and then put in the washing machine. Autistic people told me they were concerned when their period started it would come gushing out and be noticeable so putting in place multiple protections, e.g., menstrual pad and period underwear (and menstrual cup if you prefer) are practical ways to deal with that anxiety.
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One question I had when I began the research was in real objects how big is the womb, fallopian tubes, ovaries, and vagina. I created a diagram based on the approximate size of organs when a person starts their periods (lemon = womb, fallopian tubes = long keys, ovaries = 25 cents (2 pence in the UK), and vagina = travel toothpaste or mini paint tube). NOTE the ovaries and fallopian tubes actually have a gap between them and are held in place by ligaments which are not included in this diagram to keep things simple.
8. Have plenty of pain strategies
The idea of the pain seemed to be a great source of anxiety for many young people I spoke with. Obviously, not everyone who has periods has pain, but it’s understandable to worry, so making a concrete pain plan is a good starting point. Also, be sure to explain that if the usual over the counter pain remedies and a hot water bottle don’t work, a doctor can prescribe medication to help. It’s also worth explaining the pain is typically acute for only the first few days. Many autistic people appreciate knowing the source of this pain, so if this is true, share a diagram on where muscles are in the body and how they are all connected when explaining why periods are painful.
9. Explain menstrual cycle lengths may vary
Menstrual cycles are not four weeks long for everyone; some people may have five or six weeks or even three weeks, and things like stress can alter cycle length. When you first start periods, it takes time for your body to settle into a routine. It’s important to explain it won’t be the same each cycle.
10. Be honest
The majority of people aren’t too thrilled about having periods. Be sure to share that this is one of the many of the things people have to deal with in life and how important it is to do the best we can.
Twitter: @ robyn_steward
This article was featured in Issue 88 – Knowledge is Power