May Institute
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Coming of Age with a Developmental Disability
Categories: ASD and DD, Child-focused; Behavioral Health, Child-focused



Question

My 12-year-old daughter who has autism is approaching puberty. Do you have some suggestions for talking to her about monthly periods?

Answer

For parents of typically developing girls, talking to their daughters about puberty and helping them to navigate the experience can be challenging. For parents of girls with developmental disabilities, helping their daughters manage difficult issues like menstruation and their changing bodies may be particularly daunting.

It is important that parents plan ahead and prepare their daughter for puberty before it occurs. It is a good idea to gradually introduce the topic and give her time to learn skills related to personal hygiene. The girl’s pediatrician may be able to help parents roughly determine when menarche, the beginning of menstruation, may occur.

Before beginning this important conversation, parents must carefully consider what their daughter is likely to understand and which techniques have worked to teach other life skills.

For higher functioning girls, social stories may be helpful. Social stories are usually written in the first person and give short, positive descriptions about a social or life skill-related situation. For example, a social story might start with, “I am growing up. Soon, I will have a period that will cause me to bleed. This happens to all girls my age.”

Many examples of social stories about puberty are available on the Internet, but it is important to individualize social stories for a child’s developmental level. For girls who may be less able to understand written text or text that is read to them, picture stories may be helpful. Some picture stories might show the process of using and disposing of pads.

For lower functioning girls, techniques like task analysis, which breaks down larger tasks into small manageable steps, and chaining, which involves systematically praising and rewarding the child for completing steps of a task independently, may be useful.

Teaching girls to wear and dispose of panty liners before their period starts may also be a good technique. First, teach the girl to unwrap and place the liner. Next, teach her to remove it and place it in a bag. Finally, teach her to throw it away. It is important to reinforce each step of the process with special rewards in the beginning, then gradually fade these rewards. For some girls, wearing a pad may be uncomfortable or unfamiliar and they may need to be rewarded for keeping it on for progressively longer periods of time.

Some girls with developmental disabilities may experience cyclical changes in their behavior problems that could be related to cramping or headaches associated with menstruation. If their daughter is non-verbal, parents may have difficulty knowing whether she is in pain. In these cases, they should keep track of and record both fluctuations in behavior problems and their daughter’s menstrual cycle. With a pediatrician’s approval, parents may want to give their daughter over-the-counter pain relievers before a period begins to prevent behavior problems. If parents have carefully recorded their daughter’s problem behaviors before the introduction of a pain reliever, they can then determine if the use of pain relievers helps minimize behavior problems.

In some cases, hormonal contraceptive medication may lessen cramping and make the girl’s menstrual cycle more predictable. There may be side effects to these medications, however, so careful consideration and discussions with medical practitioners are essential before choosing this option.

Coming of age may be particularly challenging for girls with developmental disabilities, but supportive parents and educators can make the process easier and more comfortable for these special young women.

By Shannon Kay, Ph.D., BCBA-D