How to help your girl, whose special needs make the first menstruation experience more challenging, cope with getting her period for the first time and develop healthy habits from the beginning.
If you are a parent who is worried about how to prepare your daughter for her first period, you are not alone. This milestone requires many new skills and the introduction of topics that can be uncomfortable for parents and girls. It can be challenging to know exactly how much information to provide and when.
For parents of girls with special needs, it can be especially confusing to know how much support to give when your daughter is facing a milestone of physical maturation. And the parental anxiety about sending her out—to school, to a friend's—when your assistance is not as readily available can only be assuaged with proper preparation.
Here are recommendations intended to help you sort through these issues.
Make plans to prepare your daughter with practical information about what she will experience during puberty and menstruation. This includes giving her descriptions of how these changes affect her body (including changes in appearance, odor, mood, etc.) and showing her what this means for self-care (for example, bathing daily, treatment of menstrual pain).
Use what you know about your daughter's language level, learning, and motor skills to adjust how and what you teach her. If you are unsure about how to do this, asking your daughter’s teachers or therapists for ideas may be helpful. Follow your daughter's lead and teach her in a way you have observed is effective in other areas of her life. (How does she like to explore? Does she learn best with repetition? By manipulating objects?)
Children and adults with autism, of all levels of ability, focus and learn best with visual information. Story boards are excellent tools to introduce multi-step tasks and to demonstrate detail that may otherwise be uncomfortable or difficult to describe. The type of visual supports used (objects, pictures, or videos) depends on your daughter's interests and abilities. See the "Faces Pain Scale" below and find other printable visual aids here.
Provide information in a concrete manner and avoid hypothetical examples. Break down details into specific steps, and demonstrate if necessary.
Make no assumptions.
Do not assume your daughter has prior knowledge or that the information you give her will easily translate across scenarios. Show her what self-care looks like in different settings (at school or while traveling, for instance). Teach her new vocabulary if this is helpful.
Help her create routines and simple rules.
For girls of all abilities, routines and rules are supportive tools that promote comprehension and comfort. If your daughter receives assistance for self-care activities, having her caregivers use the same sequence and terminology will help her better understand what is happening, increase her participation, and may decrease anxiety. For girls who are expected to engage in self-care independently, the use of a system of reminders for self-care and concrete rules is recommended to reduce errors and accidents.
Build collateral skills.
This is a good time to review related skills with your daughter, particularly the concepts of social boundaries and private versus public. This will increase her ability to understand the when and where of asking questions and exploring her body. Another important skill involves your daughter’s ability to indicate and describe levels of pain and discomfort; it is recommended that parents and the educational team identify and proactively teach communication systems around these topics (such as by using a "Faces Pain Scale," pictured below).
During her period, your daughter may feel tired and moody. Her stomach may swell or cramp. Using a pain scale like this can help her tell you how much she hurts or feels uncomfortable.
Incorporate her interests and preferences.
Consider your daughter's sensory sensitivities when selecting methods and materials for cleaning. The success of self-care routines may be affected by your daughter's motor skills, so keep this in mind as well (is it easier, for instance, to use wipes than to neatly fold toilet paper?). Involving your daughter’s special interests can also increase her comfort with her period (try using a bag with her favorite pattern or characters to store her pads and related supplies).
Get appropriate medical care.
The age of first menstruation is variable and for girls with a history of significant delays, puberty may occur early or late. Pediatricians and other medical professionals can help you plan for the onset of puberty and your daughter’s period, and they can help you understand the available options for contraception and for protecting girls against some sexually transmitted infections. Hormonal contraception can also be used to eliminate or decrease periods, increase their regularity, and reduce painful symptoms of menstruation. When used in this manner, contraception is a medicine that can help some girls to better manage their period.
Get more info on birth control and the HPV vaccine for girls with special needs
Engage her educational team, and update her IEP.
Individualized education programs should include the development of self-care, or adaptive, skills. It is highly recommended for parents and educational teams to make plans for exchanging information about useful communication strategies and supports. In addition, make sure you understand the specific rules at school for bathroom breaks and if necessary, talk to your daughter’s teacher and advocate for a self-care plan that is comfortable and reasonable.
Make a pain and mood management plan.
Menstrual cycles are often accompanied by physical pain and changes in mood. As there are a number of different preventative and curative strategies, parents should prepare to explore what works best for their daughters (e.g. a heating pad). If medications are to be used, parents should create rule-based plans for giving and tracking their use (even for over-the-counter medications like ibuprofen). Families should always seek medical help for unusual pain or symptoms such as heavy bleeding during menstruation.
Girls with special needs may often have difficulty with communication, even when they are highly verbal. This means that they may not think to ask for help or may not know how to ask questions or provide details. Thus, parents are strongly encouraged to actively monitor their daughter’s menstrual periods, mood, and related self-care (keep track in a log) to ensure things are going smoothly and that there are no unusual symptoms or excessive pain. Engage the assistance of another trusted and familiar adult such as a teacher to help collect information across settings.
As you can see, there is a lot to do to prepare a young woman for her period. Fortunately, there are a growing number of resources for girls with special needs. Take some time to consider how the above points apply to your daughter. By anticipating her needs and providing her with information and supports (such as visuals and routines), your daughter will be more than ready to face this next milestone. As for you, well, take a deep breath and have faith: A little bit of planning goes a long way.
Dr. Marisela Huerta is a licensed clinical psychologist at the Center for Autism and the Developing Brain, NewYork-Presbyterian/Weill Cornell & Columbia.