Down Syndrome: Five Things to Know About Down Syndrome and Sexuality
You may be surprised to find an article on Down syndrome and sexuality, since few doctors mention this topic and it is often not included in the typical prognosis and diagnosis of Down syndrome. However, you shouldn’t be surprised.
Common perceptions are that people with disabilities have neither the interest nor the capacity for the adult relationships that the rest of us take for granted. This is, however, completely false.
People with Down syndrome go through puberty just like everyone else and have the same feelings and desires as everyone else. This is nothing to fear, however. With a little education tailored to their individual needs, adults with Down syndrome can learn to be smart about their sexuality and learn to minimize their risk of dangerous situations.
1. Sexuality is part of everyone’s life
When we talk about sexuality and Down syndrome, we are not referring only to adolescents and adults. All humans go through many different stages of sexual development, starting when they are babies.
The first stage is to develop emotional bonds with parents and family members. School-age children deal with the beginnings of modesty and a desire for privacy. Of course, adolescents enter puberty and begin to feel sexual desire. It’s nothing to be ashamed of, but teens with Down syndrome should be given proper education to make sure they know how to handle these feelings appropriately.
2. The decline in institutionalization led to more opportunities for people with Down syndrome
Until the 1960s and 1970s, people with Down syndrome were often institutionalized in single-sex buildings and didn’t have much opportunity to interact with the opposite sex. Now, people with Down syndrome have independence and opportunities available to them, and it only follows that they should also want what is available to all other members of society: the right to develop and pursue meaningful relationships.
3. There are additional difficulties for people with Down syndrome in relation to sexuality
There are, of course, added difficulties when it comes to people with Down syndrome and sexuality. It is probably obvious that there is much more prejudice towards people with Down syndrome who engage in sexual behavior.
Parents also have a lot more anxiety about it. Unfortunately, there is a good reason for this anxiety. People with Down syndrome have cognitive deficits that make them more likely to be victims of sexual abuse, unwanted pregnancy, or sexually transmitted diseases. Women are especially vulnerable to problems of abuse and exploitation. They may not know the difference between “good touch” and “bad touch.” They may not know how to say no if something makes them uncomfortable. They may feel lonely and willing to put up with inappropriate behavior to get attention.
The isolation and communication problems faced by many people with Down syndrome can make it difficult for them to access sources of support to help them make the decisions that are right for them.
4. There are ways to prevent exploitation and abuse
The best way to help young people with Down syndrome become smart about their sexuality is to start educating them when they are still young. Sex education for children with Down syndrome should begin in high school and should focus on personal safety.
Children should be taught the difference between playing well and playing badly, and how to “just say no” to unwanted advances or touching. A concept called “Circles” can be used for older or more cognitively advanced children. The circles represent different levels of personal relationship and intimacy. Students learn what contact behaviors are appropriate for each level. They then learn that sometimes a friend may want to be closer than they want, in which case they have to say “STOP” very clearly to them.
Sex education should be individualized for each student with Down syndrome based on their ability to understand the material. However, it’s important to cover all the things that would normally be covered in sex education, because teens with Down syndrome are likely to need to know these things sooner rather than later to stay safe.
The more openly and honestly you talk with your teen or young adult with Down syndrome about sexuality, the safer they will be. The more you understand, the better you both will feel about this aspect of your life.
Dating is also something teens with Down syndrome will often want to try for themselves. Certain social skills are required to be able to date, and these skills can be taught if necessary.
5. People with Down syndrome can get married.
Marriage is by no means common for people with Down syndrome, but it continues to become more common. Many scoff at the idea, wondering how two people who still need helpers to function in the world could live together and manage household chores, but it’s possible.
Tea Wall Street Journal wrote an article about some of the problems of Down syndrome marriages.
“There is a growing sense of the need to catch up, and middle and high schools are beginning to offer sex education and social skills courses designed for teens with Down syndrome and other cognitive disabilities. “There’s no reason to think they have a different libido,” says William I. Cohen, who directs the Down Syndrome Center of Western Pennsylvania at Children’s Hospital of Pittsburgh. “They want what we all want: friendship, companionship, love.” (“A young woman plans her wedding, “Amy Marcus, Wall Street Journal, October 2005)
Marcus also reports on a conversation a young woman with Down syndrome had with her mother about her upcoming marriage to another young man with Down syndrome:
“At one point, he raised the issue with his daughter: Weren’t you worried that after they got married, Mrs. Bergeron might have to take care of Mr. Desai?
“You don’t take care of dad? Subject’s mother doesn’t take care of her husband? Isn’t that what wives do?” her mother says that Mrs. Bergeron responded. “She put me in my place,” Mrs. Bergeron said. “I backed off.”
fertility problems
Most men with Down syndrome are infertile (although not all). Most females have reduced fertility but are still quite fertile. It will be important to teach the couple how to use birth control responsibly.
Romantic love and relationships can be a wonderful thing. There is no reason why people with Down syndrome should miss out on one of life’s greatest advantages, especially when they are biologically and psychologically capable of doing so. You just need to take a few extra precautions to make sure your loved one with Down syndrome is prepared by educating them about sexuality and all that it might entail.