Our daughter has been loving and affectionate for twelve years. But since she’s reached puberty she’s been biting, scratching and completely checking out when she gets her period. What is known about girls with autism at puberty?
This week's "Got Questions?" answer comes from Cassandra R. Newsom, PsyD, assistant professor of pediatrics and director of psychology education, and Cora M. Taylor, PhD, TRIAD postdoctoral fellow – both of Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), an Autism Treatment Network center in Nashville, Tennessee.
Puberty is a challenge for many children and their families. It can be especially tough for those with autism spectrum disorder (ASD) – many of whom struggle with change of any kind.
Puberty, of course, involves non-stop change. Your daughter’s body is changing, her hormones fluctuating. Adolescence also brings an upheaval in social interactions – which may already be difficult for her to navigate.
Research suggests that puberty brings a number of special challenges for girls with autism. They have higher rates of abnormal hormone changes. This can produce irregular menstrual cycles, cramps, polycystic ovary syndrome and severe acne. Gynecologists also report that girls with autism are more likely than girls with other types of developmental issues to have behavioral problems related to their menstruation. They may become more aggressive, obsessive and destructive. They may experience increased repetitive behaviors.
Consult with your daughter’s doctor
Some girls who have both autism and epilepsy experience an uptick in seizure activity related to their new hormonal cycle. Talk to your doctor if you suspect your daughter may be experiencing new seizures or an increase in seizures.
These may be signs of a medical issue or serious mood problem. Adolescence is a time when we see an increase in depression and anxiety in individuals with ASD, particularly in those who are older and more verbally and cognitively able.
Any time you see a dramatic change in your child’s behavior, we encourage you to consider what might underlie the behavior, be it pain, discomfort, fear, confusion, sadness or sensory overload. Pay special attention to self-injury, changes in appetite or sleep patterns, frequent complaints of feeling ill (headaches and stomachaches) or an abrupt loss of interest in activities that she used to find fun.
During the hormonal tumult of puberty, young teens have to contend with an increasingly complicated social scene. It can be a time when they become painfully aware of how they’re different from their peers. All this can result in higher levels of withdrawal, depression and anxiety. The teens we work with in our center often have trouble finding appropriate ways to express their feelings about this tumult. As a result, we often see difficult and challenging behaviors emerge.
Helping your adolescent navigate puberty
It’s important to teach your daughter about her period and what to expect. Do this the same way that you teach her about other things: Break down information into simple facts, using visuals, lots of repetition and social stories.
To help her prepare for each period, keep track of her cycle on a calendar. Let her help you make a hygiene kit that she can keep in her bathroom, her backpack or with a school nurse. Finally, make sure she has a way to let you know if she has cramps or a headache. You may find it helpful to make notes about the onset of her period, her mood, sleep, appetite and when problem behaviors occur.
You can use the same supports during puberty that you have always used to help your child. Remind her of good ways to express strong emotions. If she’s verbal, encourage her to use her words to label feelings (“It sounds like you’re feeling angry,” or “So when she did that, it made you sad.”) If your child is less verbal, use supports like pictures, signing, word cards or an “emotion thermometer” (right) to help her express her feelings.
Consider getting support from a counselor or therapist who’s familiar with your child’s diagnosis. He or she can help you identify why her challenging behaviors are occurring, develop a plan to reduce them and evaluate her for depression or severe anxiety.
And now for the good news …
We know how difficult it is to parent any child through puberty. But the news is not all bad! Over the course of adolescence and adulthood, the core symptoms of ASD, along with hyperactivity and irritability, often decrease. Progress can also come with your teen’s natural desire for more independence and control. Use this to your advantage by offering more choices, such as choosing between two outfits, helping plan a meal and planning activities with family or friends.
Finally, know that you are not alone. The journal Narrative Inquiry in Bioethics recently published an entire special issue on how parents help their adolescents with autism navigate the transition to adulthood.
Editor’s note: For more on teen issues, please see these Autism Speaks blogs on teen social skills and teenage sexuality. Dr. Newsom also recommends this workbook: Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism, by Mary Wrobel.
Thanks to your support, Autism Speaks is funding a number of studies aimed at improving life skills and quality of life in teens and young adults. You can explore these and other donor-supported research programs using our Grant Search engine.