Adolescence with Angelman Syndrome

Quick Overview

This session focused on adolescence and puberty in individuals with Angelman Syndrome (AS). The speaker discussed the physical and emotional changes that occur during puberty, such as increased growth, hair growth, and hormonal fluctuations. They also addressed the management of menstruation in girls with AS, including options for menstrual suppression. The speaker emphasized the importance of individualized care and working with healthcare professionals to create a plan that suits the needs of each individual. They also mentioned the role of anxiety in puberty and the potential use of medications to manage anxiety symptoms. Overall, the session provided insights and recommendations for navigating adolescence with AS.

Good evening, everyone, and happy Monday. Thank you so much for joining me on a Monday.


In this session, I will be discussing adolescence in individuals with Angelman Syndrome (AS). Puberty is a time of significant physical and emotional changes, and it is important for parents and caregivers to be prepared and informed about what to expect during this period.

Puberty in Girls

Puberty typically starts between 8 and 13 years of age for girls with Angelman Syndrome. During this time, girls experience an increased rate of growth, develop breast buds, and start to grow hair under their arms and in their pubic areas. Menstruation usually begins about two years after the development of breast buds. It is important for parents to be aware of these physical changes and to provide support and guidance to their daughters.

Managing Menstruation

When a girl with Angelman Syndrome starts her period, parents have a few options for managing it. Some parents choose to let their daughter have a natural menstrual cycle, while others prefer menstrual suppression. The decision should be based on the individual needs and preferences of the child and family. It is important to consider factors such as the child’s ability to understand and cope with menstruation, anxiety levels, and the support available at school.

Birth Control Options

There are various birth control options available for girls with Angelman Syndrome. Oral contraceptives can be used to suppress menstruation or regulate periods. Progesterone-only pills are often recommended for girls with a higher risk of seizures. Other options include intrauterine devices (IUDs) and implants. It is important to consult with a healthcare professional to determine the most suitable option for each individual.

Puberty in Boys

Boys with Angelman Syndrome also go through physical changes during puberty. They develop facial and pubic hair, experience frequent or spontaneous erections, and may have body odor. Testosterone is the hormone responsible for these changes. It is important to address any emotional or behavioral changes that may occur during this time, such as mood swings or self-stimulatory behaviors.

Shaving and Grooming

Boys may need guidance and support when it comes to shaving and grooming. It is recommended to start with an electric shaver and gradually introduce the process. Watching a male figure shave, using social stories, and starting with an electric shaver can help boys become comfortable with the grooming routine.

Anxiety and Myoclonus

Anxiety is a common issue during adolescence in individuals with Angelman Syndrome. It is important to address anxiety symptoms and seek appropriate support and treatment. Myoclonus, a type of involuntary muscle movement, may also increase during this time. Managing anxiety and ensuring adequate sleep can help reduce myoclonus symptoms.


Adolescence can be a challenging time for individuals with Angelman Syndrome and their families. It is important to be prepared and informed about the physical and emotional changes that occur during this period. Consulting with healthcare professionals and seeking appropriate support can help navigate the challenges of adolescence with Angelman Syndrome.

Talk details

  • Title: Adolescence with Angelman Syndrome
  • Author(s): Amanda Tourjee
  • Author(s)’ affiliation: Massachusetts General Hospital
  • Publication date: 2020-08-10
  • Collection: 2020 ASF Virtualpalooza