Autism and periods. When we talk about period equity, it’s period poverty that most often comes to mind—but there are many other barriers in addition to financial ones. Access to safe period care may be restricted due to racism, menstrual taboos, and transphobia, for example. One of these barriers is often under the radar: neurodivergence.
Simply put, whereas neurotypical brains perceive and behave in a manner aligned with the majority of society, neurodivergent brains experience the world differently, in an array of ways. From autism to ADHD, there’s a whole spectrum of neurodiversity to consider when it comes to period equity.
To help us dive into the differences and barriers as we work toward greater understanding and advocacy, we had a meaningful conversation with our friend and joni ambassador, Jody Hollis, about her 18-year-old daughter with autism and her experiences with period care to help us understand some of the unique differences and challenges they have faced.
Please note: We understand with great sensitivity the arguments around whether to use person-first vs identity-first language when speaking about autism. For this article, we have used person-first language in. For more discussion on this, please visit Autism Canada.
Meet Victoria
Jody speaks with pride about her daughter: “Victoria is wonderful! She is a happy, content person.”
When Victoria was first diagnosed with autism, Jody says that she and her husband took her to endless therapies. It was exhausting, stressful and costly. “I’m not a doctor,” stressed Jody. “I’m a mom with a daughter who has autism. I’m not saying every child is like this. This is my experience.”
For Jody, life became easier when they stopped many of the different therapies and accepted life as it is—while enjoying a simple, healthy lifestyle. However, support is needed in various ways and degrees in order to function in a neurotypical society. And with those supports and her family's advocacy, Victoria leads a happy and active life and participates in family activities, from skiing to swimming, dog walks to stimming and dancing to The Wiggles.
Victoria has non-speaking autism. She will communicate simple phrases like, “I want strawberries.” But mostly her communication is non-verbal and Jody understands her very well through body language and facial expressions.
“Victoria is dependent but she’s patient and happy. She teaches me so much about what’s important in life. We don’t need a lot of stuff to be happy. She doesn’t give two shits about stuff! She wants to be safe and she wants to be loved."
Visual Period Care Cues for Autism
“Victoria is a 100% visual learner,” said Jody. “For example, I can’t just say ‘wash the fruit’, I have to show her exactly how.” Once Victoria understands all the steps, she does it perfectly and methodically, again and again. But as a visual learner, the key is seeing the steps.
When it comes to periods, Victoria’s EA introduced a menstrual care picture strip similar to this one with the visual steps on caring for yourself and your period. Visual steps might include a picture of bleeding, a pad, where to stick the pad on your underwear, how to roll up the used pad, and put it in the garbage can.
Jody is also very open about her period and has walked Victoria through on her own, as Dr. Temple Grandon (renowned autism educator) has explained, if you’re teaching someone with autism how to pee, you need to pee in front of them.
“I had to take the guesswork out of it and be consistent with a pad that’s comfortable and works. If you can start with joni—you know it’s healthy and you know it’s good. It’s a great place to start with periods,” said Jody.
Period Care Product Considerations for Autism
Like many people with autism, Victoria has sensory sensitivities and OCD. For her, the pad has to be the right length and the sides have to stick down. It has to feel just right or it simply won’t work.
“She has to feel comfortable – otherwise, she’ll just take it off and you’ll end up spending a million dollars on period care,” emphasized Jody. “For me, autism has environmental factors as well as a genetic disposition so I want to know more than anything that she’s using safe and clean products, like joni.”
Victoria also likes period underwear because it’s simple and requires only a few steps to use. Conversely, period cups are not only more difficult to master but can be “...too personal and invasive,” especially where support workers are involved. Pads and underwear give Victoria period care independence.
Managing the Cycle
“It’s hard because Victoria can’t always tell me when she’s feeling bad,” said Jody, but explained that they keep track of her period. Over the years, Jody has also learned the signs, such as a reduction in Victoria’s patience or increased stimming. “When that’s the case I sometimes ask, ‘is your period coming soon, Victoria?’ Yes!”
Along with Victoria comes a posse of people and Jody explains how important a partnership approach is to period care. Her family, caregiver, EA, behavioral therapist, and speech therapist are all involved. Everyone knows when it’s Victoria’s period and that she may need support.
Managing Expectations
We’re so grateful to Jody to allow us to share Victoria’s story and shining a light on a largely marginalized experience of menstruation. As Jody says, the whole Instagram pics of a perfect family are not realistic, “We all have our challenges and when we share those challenges, that helps everybody. Some people judge autism and say how awful it must be. It is tough but it comes with a lot of learning. Victoria teaches me, again and again, the different values in life. Because of her, I’m more patient and less judgemental. I’m less concerned with stuff and more concerned about our health—health is everything.”
Period equity is not the same as equality. Equity acknowledges different people need different levels of support. Achieving period equity all begins by acknowledging the different barriers that are in the way for various people. When it comes to autism and periods, we must look at the barriers and get the full picture toward greater understanding. It begins by acknowledging diversity, including neurodiversity so that no one is left behind. Together, we can!