All children and youth, including those with developmental disabilities and autism spectrum disorders (ASDs), have questions about physical changes in their bodies and emotions and feelings they experience during puberty and as they grow up. It is important to help children and youth understand these changes and to talk with them early and often about sexuality.
Talking about these issues may make parents feel uncomfortable or embarrassed. Your child's pediatrician can help. This is an important topic; sexuality is healthy and normal and a key part of being an adult.
Teens with ASDs have curiosity about their own bodies and the changes they are experiencing in adolescence. Like other teens, they see and hear about sexual behaviors on TV and in movies and other media. All teens need to be given information about sexuality in a way that they can understand. Parents of children or youth with ASDs need to start discussing sexuality with their children as part of growing up. During visits with your child's pediatrician, discuss your concerns about your child's sexual development and consider the following issues:
All children and teens have the right to privacy. You and your child's pediatrician should respect that privacy during physical examinations. For example, at some point it will become inappropriate for you to accompany your child during the physical examination. You can join your child and the doctor for a discussion after the examination is complete.
Your child's pediatrician can teach you about the typical phases of puberty. That way, you can be aware of changes in your children and how those changes might affect their bodies and behavior.
As children enter puberty, they will have to learn new ways to clean and care for their bodies. These new skills should be taught in steps. Children with ASDs may require special training and extra time to learn these new skills.
Many youth with ASDs may not have the same social opportunities to learn and practice relationship skills as children with typical development. Youth with ASDs may not often go to school dances, summer camps, or trips to the mall with their friends. However, appropriate social behaviors can be learned, often with practice, repetition, and reward, until the skills become natural.
Youth with ASDs may need help in learning basic social skills, such as how to meet and interact with others, how to display good manners, and what is OK and not OK in social settings related to sexual language and behaviors.
Children and youth with disabilities, including ASDs, have an increased risk of being sexually abused. This risk may decrease when they know the difference between what is appropriate and not appropriate in their own behaviors as well as in those of the people around them.
All children receive sexuality education as part of the general education curriculum in school. However, students with ASDs may need sexuality education to be offered in different settings or with special teaching materials and may require frequent reviews of the information. Topics of sexuality education should include changes in body parts that occur during puberty, hygiene, medical examinations, and information about periods (for girls). Also, appropriate behaviors and etiquette should be taught. Make sure you know when sexuality education occurs in your child's school; it may begin at a younger age than you expect. If your child has an Individualized Education Program (IEP), the IEP should specify any needed modifications and accommodations to the general sexuality curriculum.
Some girls with ASDs struggle with hygiene related to their periods. Talk with your child's pediatrician about options to control how often and how long periods might occur. Gynecologic examinations can be very stressful for some girls and require special arrangements.
If there is a genetic explanation for your child's ASD, talk with your child's pediatrician about the risk of your child or his siblings having a child with an ASD.
Dealing with the changes of growing up, going through puberty, and being a teenager is not easy. It may be more difficult for youth with ASDs. As parents, you can help and support your child by talking about puberty and sexuality on a regular basis and in a matter-of-fact way. There is no reason to be embarrassed, and it helps to have a good sense of humor! It is also important to respect your child's privacy and encourage independence. Talk with your child's school about sexuality education classes. Remember that your child's pediatrician is also there to help you with any questions about your child. It is important to be aware of any risk of sexual abuse. Teaching your children about their own sexuality will ensure that they will protect and respect their bodies.
American Academy of Pediatrics HealthyChildren.org: www.HealthyChildren.org
Diverse City Press, Inc offers teaching videos: www.diverse-city.com
Down Syndrome NSW, resources for girls and women with Down syndrome: www.dsansw.org.au/downloads/LibraryPWDS.pdf
Future Horizons, a world leader in ASD, Asperger syndrome, and pervasive developmental disorder publications: http://fhautism.com
James Stanfield, a publishing company with sources describing sexuality education: https://www.stanfield.com/family-ed-other.html
Parenting Press offers books for parents and children: www.parentingpress.com
Sexual Health provides sexuality information, education, support, and other resources: www.sexualhealth.com
Teach-a-Bodies distributes anatomically correct dolls useful for teaching youth with developmental disabilities such as ASDs: www.teach-a-bodies.com
Family handout from Autism: Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians, 2nd Edition, developed by the American Academy of Pediatrics (AAP) Council on Children With Disabilities Autism Subcommittee (ASC).