I am a single dad raising my autistic daughter. Can you give me any advice on educating her and helping her navigate puberty and her menstrual cycle? I’m lost! —Tony
Hey Tony, I first want to applaud you for understanding the importance of helping guide your daughter through this transition into womanhood! All girls need help making sense of puberty, but especially girls who may have a limited ability to communicate or be aware of their own bodies. There are so many layers to this discussion, and you may want to address different aspects at different times.
- Body parts: anatomically correct terms, differences between males and females
- Puberty: what happens internally and externally, the purpose of these changes
- Sex: what it is, masturbation, your family’s personal values and beliefs about sex, STDs, contraceptives
- Safety: who is allowed to see and touch her body, what to do if she feels unsafe or becomes violated
Before starting the discussion, you will need to determine how your daughter learns best, and how much or what type of information will be helpful for her. This will be an on-going conversation, not a one-time thing. As she experiences new things, she will continue to need your support and guidance. For significantly impacted children with autism, it may not be appropriate to get into every detail, whereas higher functioning children may benefit from more in-depth learning.
Books can be a great resource and an easy way to start the puberty conversation. Reading the information from the pages helps take the pressure off of you to come up with what to say. Books may also be more interesting and easier to pay attention to for your daughter. Here are a few you can check out:
- The Care and Keeping of You: The Body Book for Younger Girls by Valorie Schaefer
- Puberty and Special Girls by Rose Stewart, Heather Anderson, and Fay Angelo
- Amazing You: Getting Smart About Your Private Parts by Gail Saltz
- Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wroble
Online resources are another great option that are cost-effective and easily accessible. If your daughter enjoys surfing the net, she may find websites most helpful in learning about her changing body. Here are a few to explore:
Starting her period can be a scary and confusing thing for your daughter. The more you talk about it ahead of time, the more familiar she will be with the terminology and process when it actually happens. Here are some ideas to consider to help her through menstruation:
- Once she has started her period, create a calendar to help your daughter know when it should be coming next. This may help reduce anxiety when she starts her cycle each month, because she will know ahead of time to be expecting it.
- Utilize a schedule to prompt her when to change her pad or tampon. This could be a visual with various times of the day such as waking up, after lunch, after dinner, before bed, etc. Or it could be a time-based schedule to prompt the change every few hours.
- Create a supply kit. Make sure she always has pads or tampons in stock. If your daughter is not willing or able to use pads or tampons, another great option is leak-proof underwear designed for menstruation. (Check out www.shethinx.com, pantyprop.com, and www.lunapads.com)
- Remember that she may be in pain. Menstrual cramps are no joke! And even if she’s not able to say “my stomach hurts,” she will most likely feel the pain of cramping. Be diligent about noticing changes in her mood or behavior. If you can see she’s in pain, consider giving her a pain reliever or a heating pad.
- Set up regular gynecologist appointments for your daughter. Maintaining her female health is critical, and meeting with the doctor will give you more information on how best to help your daughter.
Lastly, I urge you to continue the safety conversation with her. Researchers estimate 25% of girls are sexually abused by the age of 18! These numbers don’t even necessarily account for the hundreds of thousands of girls with autism who may be unable to report sexual abuse. Talk with your daughter about boundaries often, and give her opportunities to assert those boundaries! (For example: denying hugs when she doesn’t want them.) She needs to know that her body belongs to her, and she must know who is allowed to see and touch her. Depending on her level of functioning, she may be self-sufficient enough to know that NO ONE is allowed to see or touch her without her permission. On the other hand, if she is dependent on others to meet her basic needs, you will need to teach her who the “safe” people are. This may include you, doctors, and any other caregivers who are responsible for her bathing, dressing, or toileting.
I hope this helps! Below are some other articles for you to check out. Remember: keep the conversation going! Keep up the great work in helping your daughter face all these changes headed her way.
Angelina works as a Board Certified Behavior Analyst, specializing in assessing and treating children and adolescents with autism, down-syndrome, and other developmental delays. She began her career in Applied Behavior Analysis in 2006, following her youngest brother’s autism diagnosis, and has since worked with dozens of children and families. She also writes a blog about her experiences as both a professional and a big sister. Her brother, Dylan, remains her most powerful inspiration for helping others who face similar challenges.
Learn more about Angelina and her blog, The Autism Onion, at www.theautismonion.com or www.facebook.com/theautismonion.
This article was featured in Issue 54 – Surviving Family Challenges