You may be surprised to find an article on Down syndrome and sexuality as few doctors bring this up and it is not often included in the typical prognosis and diagnosis of Down syndrome. You shouldn’t be surprised, however.
Common perceptions are that people with disabilities do not have either interest or ability for the adult relationships the rest of us take for granted. This is, however, completely false.
People with Down syndrome go through puberty just like everyone else, and they have the same feelings and desires as everyone else. This is nothing to be afraid of, however. With a little education tailored to their particular needs, adults with Down syndrome can learn to be smart about their sexuality and learn how to minimize the risk of dangerous situations.
1. Sexuality is a Part of Everyone’s Life
When we talk about sexuality and Down syndrome, we are not just talking about teenagers 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 kids deal with the beginnings of modesty and the desire for privacy. Of course, adolescents enter puberty and start feeling sexual desire. It is nothing to be ashamed of, but proper education needs to be given to teenagers with Down syndrome to make sure they know how to handle these feelings in an appropriate way.
2. The Decline of Institutionalization Led to More Opportunities for People with Down Syndrome
Up until the 1960s and 1970s, people with Down syndrome were most often institutionalized in single sex buildings, and did not have much opportunity to interact with the opposite sex at all. 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. Additional Difficulties Exist for People with Down Syndrome in Relation to Sexuality
There are, of course, added difficulties when we talk about people with Down syndrome and sexuality. It is probably obvious that there is a lot more prejudice towards people with Down syndrome who engage in sexual behavior.
Parents have a lot more anxiety about it, too. There is good reason for this anxiety, unfortunately. People with Down syndrome have cognitive deficits that make them more likely to be a victim to sexual abuse, unwanted pregnancies, or sexually transmitted diseases. Women especially are vulnerable to issues 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 is making them uncomfortable. They may be lonely and willing to put up with inappropriate behavior in order to get attention.
The isolation and issues with communication that many with Down syndrome face may make it harder for them to access sources of support that will help them make 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 be smart about their sexuality is to start educating them when they are still young. Sexual education for kids with Down syndrome should start in junior high, and should focus on personal safety.
Kids should be taught the difference between good touch and bad touch, and how to “just say no” to advances or touching they don’t want. A concept called “Circles” can be used for older or more cognitively advanced kids. Circles represent different levels of personal relationship and intimacy. Students learn what the appropriate touching behaviors are for each level. They then learn that sometimes a friend might want to be closer than they want, in which case they have to tell them very clearly “STOP.”
Sex education should be individualized for each student with Down syndrome depending on their ability to understand the material. It is important, however, to cover all the things that would normally be covered in sex ed, because chances are, teenagers with Down syndrome will need to know these things sooner rather than later, in order to keep themselves safe.
The more you talk openly and honestly with your Down syndrome teenager or young adult about sexuality, the safer they will be. The more they understand, the better you will both feel about this aspect of their lives.
Dating is also something that teenagers with Down syndrome will often want to try out for themselves. There are certain social skills required to be able to date, and these skills can be taught if needed.
5. People with Down Syndrome Can Get Married.
Marriage is by no means common for people with Down syndrome, but it is still growing increasingly more common. Many scoff at the idea, and wonder how two people who still need aides to function in the world could live together and manage household tasks, but it can be done.
The Wall Street Journal did an article addressing some of the issues in marriages with Down syndrome.
“There is a growing sense of the need to catch up, with junior highs and high schools starting to offer sex-education and social skills courses tailored to teens with Down syndrome and other cognitive disabilities. “There is no reason to think that they have a different libido,” says William I. Cohen, who runs 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 discussion one young woman with Down syndrome had with her mother on her upcoming marriage to another young man with Down syndrome:
“At one point, she raised the issue with her daughter: Didn’t she worry that after they married, Ms. Bergeron might have to take care of Mr. Desai?
“Don’t you take care of Daddy? Doesn’t Sujeet’s mother take care of her husband? Isn’t that what wives do?” her mother says Ms. Bergeron responded. “She put me in my place,” Mrs. Bergeron said. “I backed off.”
Fertility Issues
Most males 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 about 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 have to miss out on one of life’s biggest perks, especially when they are biologically and psychologically capable of it. You just need to take some extra precautions to make sure your loved one with Down syndrome is prepared by educating them on sexuality and for all that this might entail.
