Hello, my little sister was recently diagnosed with endometriosis. She also has autism spectrum disorder (ASD) and nonverbal, which it difficult for her to express her feelings. Do you have any suggestions on how I can help her with her new diagnosis of endo?

Thank you so much for this question! We know that endometriosis can affect anyone born with a uterus, so it’s important to recognize how this diagnosis can be experienced and managed in different ways.

For some folks on the autism spectrum, sensory challenges can also be common. Thus, if you are already experiencing pain from endometriosis, this can add to the sensory overload that one may already struggle with, if not additional sensory struggles. Additionally, it can be hard talking about reproductive health, because people don’t always use direct language and use nicknames and other metaphors to talk about sexual health and reproductive organs, which can be confusing and misleading.

First, there are some gynecologists that specialize in working with folks with developmental disabilities, or other forms of neurodivergence, like autism. Speaking to others in the autism community is a great resource to see where they get care as well.

Some things you may consider when meeting with your sister’s HCP:

  1. What are your sister’s goals? To have less pain? To be able to be more independent with managing periods and medication? To not have to deal with having a period at all? You can think about what aspect of endometriosis is affecting your sister the most and go from there. There may be conversations of medication, surgery, or other methods based on this.
  2. Asking for clear terminology and communication is also helpful so that everyone understands what is occurring. For folks who are on the spectrum and nonverbal, it is worth getting creative about shared ways to communicate. Using a pain scale with faces and numbers as a visual to describe pain, or, providing clear, concrete options about potential relief strategies such as hot pads, stretching, or warm baths.
  3. Ask their HCP about other therapies such as occupational or pelvic floor physical therapy to help with sensory. This can help with bodily awareness to be able to be more specific about where pain is located and the type of pain.
  4. Ask about resources! We recommend a book for folks called “The Autism Friendly Guide to Periods” by Robyn Steward. You can also ask your HCP about community organizations where you can connect with others about where they get care.

Regardless of your sister’s ability, it is important to remember that the challenges and pain she experience are just as valid as anyone else. Hospitals have multiple resources and referrals to help you be as supported as possible, so don’t be afraid to ask!