Navigating Menstruation: Support for Caregivers of Individuals with Disabilities

Menstruation is an important milestone in development and a typical part of life for individuals assigned female at birth. Yet experiences with menstruation can look very different from one person to the next. Cultural attitudes, communication needs, sensory sensitivities, mood changes, and uncertainty around how to talk about periods can all make this transition challenging for children and caregivers alike.

For families of children with neurodevelopmental disabilities, navigating menstruation can feel especially complex. While gathering information on menstruation for individuals with autism, intellectual disability, epilepsy, and related conditions, the Simons Searchlight team noticed a clear gap: there were very few comprehensive, disability-informed resources that caregivers could easily access and return to over time. Members of our Community Advisory Committee echoed this concern and encouraged us to help fill that gap.

We’re proud to share our new resource: Navigating Menstruation: Support for Caregivers of Individuals with Disabilities — a practical, caregiver-centered guide designed to support families before, during, and after this important life transition.

What this guide offers

This resource brings together expert insight, lived experience, and practical strategies to help caregivers feel more prepared and supported. Throughout the guide, you’ll find expert tips, best practices, and actionable advice you can adapt to your child’s unique needs.

Topics include:

• Clear overviews and definitions related to puberty and menstruation
• Common challenges individuals with neurodevelopmental disabilities may experience and strategies for navigating them
• Practical guidance on communicating about menstruation with your child
• Menstrual product options, including examples designed for mobility or sensory considerations
• Menstrual hygiene, hormonal birth control, and medical considerations
• An appendix of trusted resources, including disability-focused women’s health clinics and educational materials

Whether you’re preparing for menstruation before it begins or supporting a child who is already menstruating, this guide is meant to be revisited as needs change over time.

Expert guidance and community collaboration

In creating this resource, the Simons Searchlight team developed a framework grounded in research, community feedback, and clinical expertise. We are deeply grateful to the experts who contributed their time and insight:

• Wendy Chung, M.D., Chief of Pediatrics at Boston Children’s Hospital and Co-Principal Investigator of Simons Searchlight

• Amanda Jacobs, M.D., Chief of Adolescent Medicine at Boston Children’s Hospital

• Keely Lundy, Ph.D. candidate and SFARI-funded researcher at the University of New Mexico

• Cora Taylor, Ph.D., Co-Principal Investigator of Simons Searchlight and Clinical Psychologist at Geisinger Autism & Developmental Medicine Institute

We also extend a heartfelt thank you to our Community Advisory Committee members – April Canter, Alida James-Fenner, Christie Abercrombie, Alexandra Lee, Cheryl Richt, Rebecca Dolan, Amy Fields, Delf, Genesis Romo-Raudry, and Stacy Hanna -for helping curate this guide and ensuring it reflects the real needs, questions, and voices of our community.

A supportive tool, not medical advice

This resource is not intended to replace guidance from a licensed healthcare provider. Every child has unique needs, and the people best equipped to respond to those needs are caregivers and the child’s healthcare team. Instead, this guide is meant to be a trusted reference you can explore at your own pace, return to as needed, and use to support informed conversations with providers.

We hope Navigating Menstruation: Support for Caregivers of Individuals with Disabilities helps reduce uncertainty, build confidence, and provide meaningful support to families during this important stage of life.