Top 10 Questions on
DOWN SYNDROME and SEXUALITY   
 

Terri Couwenhoven, M.S., certified sexuality educator, parent, and author of the forthcoming book, Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, offers thoughtful answers to parents’ frequently asked questions about Down syndrome and sexuality.

If you’re the parent or caregiver of a child, teen, or young adult with Down syndrome, you’ll likely find answers to some of your more pressing questions below, but be sure to follow-up with the author’s new book, Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, available late September (back order now at 20% off through 10/31/07).

Attention Down Syndrome Support Groups: 
If you’d like to reprint all or part of this Q&A in your newsletter or post it  to your website, please feel free to do so with proper attribution to Ms. Couwenhoven, her book, and Woodbine House.

Will my child with Down syndrome have the same feelings, thoughts, urges desires, and needs around sexuality as other people do?

Yes. We are just now at a point in time in our society when we are accepting sexuality as a healthy and positive aspect of life, particularly for individuals with Down syndrome and other intellectual disabilities, who have experienced horrible oppression throughout history. Speak with any parent who has an older son or daughter with Down syndrome and they will tell you their child experiences the same feelings, desires and needs as other people do in the area of sexuality.  Just as there are ranges in sex drive in the general community, there are among individuals with Down syndrome as well. Your son or daughter will have sexual feelings and crushes, want to develop meaningful connections with others, wonder if they are lovable, want to date, and perhaps even find someone to deeply love and share a life with.

My child is only four years old.  I can’t think of any sexuality issue I need to address at such a young age.

Unfortunately in our society we tend to think about sexuality in rather limited, narrow ways. At the core of healthy sexuality is a sense of feeling valued, loved, lovable and safe and your earliest interactions with your child influence these feelings. Snuggling, nurturing touch and affection, and gentle caresses are initial ways children begin to understand they are important human beings. As your child becomes more mobile and verbal, you become his interpreter and teacher as he explores, watches, and attempts to understand the world around him. Your child, for example, learns what it means to be a girl or boy by watching what girls do, what toys they play with, how they interact with others.  At very young ages you’re introducing language and sharing messages about your child’s body (if certain parts of the body are avoided that’s a message as well) and how to get along with others (social skills). Much of this learning lays the foundation for learning about sexuality throughout the lifespan.

My daughter has difficulty understanding the concept of modesty.  How do I teach this? 

Typically developing children under the age of five often have an undeveloped sense of modesty.  If you’ve ever been around kids this age you know they love to strip off their clothes and run around naked whenever they get a chance. This lack of modesty is normal and healthy in early childhood. Early in elementary school, however, these same children become more private and modest about their bodies.  Children with Down syndrome and other intellectual disabilities have more difficulty understanding this concept and usually require extra help and instruction.  Some of this instruction can be done through modeling (remember kids with Down syndrome are great imitators), so you may have to evaluate if and how modesty is modeled in your home.  You could encourage older family members to use a robe or towel to cover the body when moving through public areas of your home, teach your child how to close doors when toileting or bathing, or recommend family members change clothes in designated private areas (rather than the middle of the living room). Beyond modeling, teaching modesty involves helping your child:

• Discriminate between when she has clothes on and when she doesn’t (i.e, teach vocabulary like dressed and undressed, naked and clothed)

• Identify designated private spaces in your home   

• Understand social rules that apply to private body parts (e.g.,  “private body parts need to be covered in public places or when other people are around”)

Although my daughter is twelve, she functions at a second grade level.  I doubt she has the emotional maturity or cognitive ability to understand what is happening to her body.    

I hear this statement often and as a sexuality educator, I do understand your concerns about comprehension. One of my toughest jobs is figuring out how to modify sexuality information so it is more understandable and then evaluating whether or not it has been understood. The developmental age your child is functioning at is critical in figuring out how sexuality education materials can be altered so your daughter has a better chance at understanding what you’re teaching.  If your daughter reads at a second grade level, for example, instructional sheets need to be at that level. For non-readers, pictures will need to be used.  Most parents have good insights on teaching strategies that work for their own child.   

Related to preparing your daughter for puberty, there are a couple of issues. First, the initiation of puberty is not dependent on social or emotional maturity or many of us would’ve never matured!  It is a biological process that will happen whether your child is emotionally ready or not.  Your job is to help your child understand these changes so she can be informed and as prepared as possible to handle things as best as she can.  Second, if you repeatedly refer to your child exclusively in the developmental context, you help others view your child as “child-like” rather than as a maturing individual. Most of the time when individuals with Down syndrome are treated like same-aged peers, they begin to understand expectations and it increases their ability to develop emotional maturity (albeit more slowly). Progress, not speed, is what’s important.  Third, once your daughter is out and about in the community, there are pretty rigid societal expectations for age-appropriate behavior, especially in the area of sexuality. People who are not familiar with your child will expect her to behave close to her chronological age (how she looks) regardless of developmental age. If your daughter (who is 12) is hugging people indiscriminately, she is violating the rights of others and jeopardizing her own safety. All of these are reasons to work at providing information and developing skills that support age-appropriate behavior.

My child is approaching puberty and the whole idea of trying to help him understand what will happen to him is overwhelming. How do I approach this?

Keep in mind that the physical and emotional changes that accompany pubescence (the process of changing) happen gradually over three or four years so preparation can occur slowly over time.  Once you or your child begins to notice physical changes, it’s a good time to begin discussions. Some early signs of physical changes in females include breast budding, height increases, and pubic hair.  Enlargement of the scrotum and testicles, height increases or hair under the arms and pubic area are early signs your son is beginning to change.  Use these concrete signs as a way to introduce the topic of puberty.  For example, “My, you’ve gotten a lot taller this year. You must be starting puberty—do you know what that means? Puberty is a time when your body changes and begins to look more adult-like.”  Or, “Have you noticed the hair under your arms? That’s one of the changes that helps you know your body is starting to change and look more like an adult.  Do you want to know what else will happen?” Once your child can anticipate changes and knows these changes are normal and healthy, ongoing teaching about different aspects of puberty can occur over time as things happen.  Be sure to use pictures that help illustrate body changes on the inside and outside and always incorporate social rules that encourage social appropriateness.  For example, “Even though these changes are normal and happen to everyone, they’re private so not all people feel comfortable talking about them. You can always talk to me, or ______ if you have questions, need help, or want to talk.”

I’m thinking my daughter will be getting her period within the year.  My physician is advocating use of the “shot” or the pill.  Is this what everyone does? How well do girls with Down syndrome handle periods?

Like educators, physicians and/or health care providers typically follow a set of rules that encourage least restrictive practices and approaches when making decisions.  In other words, your physician should be supporting you in making decisions that minimize risks for your daughter and maximize self-determination. The assumption that your daughter will be incompetent in this area of her life is unfair, especially considering she hasn’t even started menstruating. A least restrictive approach in this situation might be to begin with some good, concrete teaching that will prepare her handling her periods and then see how she does. Some girls will do well right from the get go, others will need more time to adjust to having a period and understand the responsibilities that go along with menstruating. I have found that because it is quite normal to have irregular periods in the first year of menstruating, girls with Down syndrome might have a harder time getting into a pattern or groove. For example, if your daughter gets her first period and then doesn’t have another one for four months, it’s hard to remember all the details for using a pad.  Once periods are coming more regularly, self-care skills often improve.

My experience has been that most girls with mild and moderate cognitive disabilities do quite well handling their periods with understandable instruction, advance preparation, and sometimes behavioral management techniques.  Of course, there are girls who will have more difficulties handling their periods or have more significant physical symptoms, reducing the quality of life for them and perhaps the parents.  In these situations, hormonal or surgical options may be suggested.  Health care providers often suggest hormonal options such as the pill first, then surgical options if there are: challenging behaviors triggered by the hormonal cycle that jeopardize your child’s safety or the safety of others, health conditions that are exacerbated by the hormonal cycle (e.g., seizures, diabetes), gynecological conditions that have remained unresponsive to other less invasive treatments, difficulties managing self-care even with good training and support, or specific requests by the patient (your daughter) after making an informed choice, to suppress or eliminate menstruation.

Since entering puberty my 13 year old son has shown an increased interest in masturbation, particularly at inappropriate times and places. His siblings are extremely uncomfortable and embarrassed by this behavior. How do I handle this?

Individuals with intellectual disabilities often have more difficulty understanding the concept of privacy and consequently are more likely to masturbate at inappropriate times and places.  There are many reasons for this.  Lack of privacy (often due to increased supervision) may distort your child’s understanding of when and where it might be okay to masturbate.  Or parents’ extreme discomfort with the behavior leads to quick attempts at eliminating the behavior (which doesn’t usually work too well) and prevents parents from moving into the teaching mode. Inconsistency in how others handle the behavior in different settings may create confusion (e.g., different messages at school and home) as well. Regardless of the reason, your son needs to understand that masturbation is a private behavior. Begin by providing a clear definition for what it means to be in private.  You could define a private place as a space where “you are alone and no one can see you.”  Your son, especially at this age, should have a private place he can go to unwind and do private things.  Once you’ve identified the place for him (usually the bedroom or bathroom with the door closed) create pictures of your son’s private place or label the rooms with visual cues that make sense for your child. Make sure others in your family are respecting his privacy and vice versa. When your son masturbates in public areas of the home, use calm but clear messages. For example, “rubbing your penis is private, so you need to go to your private space.”  Repeat and reinforce over time.

Some families I work with report intervals of time when masturbating seems more intense and difficult to handle.  We know that hormones being released during puberty can create powerful sensations that spark renewed interest and enthusiasm for masturbation. These periods do subside over time but can be correlated with testosterone surges occurring during puberty.  This happens to all males but usually individuals with Down syndrome need more help understanding what is happening to their bodies along with strategies for handling their feelings in socially acceptable ways.  Many females also begin to masturbate around this time, though rates are lower than for males.

My son tells me he only wants to date “normal” girls and refuses to even consider dating a girl with Down syndrome or other intellectual disability.  Why is this?

This is a hard question with multiple layers of complexities, but also a very common experience as younger generations of individuals with Down syndrome are growing up in inclusive settings. Sometimes this attitude evolves from living in a culture that devalues individuals with intellectual disabilities. The milder the cognitive disability, the more aware your child will be of the prejudices, stereotypes, negative treatment and pejorative attitudes towards people with disabilities in our society.  As a result, your child may view dating a “normal” person as a more appealing and acceptable option. In other situations, individuals with Down syndrome (or other intellectual disabilities) who grow up being told they are “just like everyone else,” are treated “just like everyone else” so their expectations are “just like everyone else’s.”  In other situations, the disability is not talked about, or more often, not understood, so your son or daughter will need help understanding his or her own disability and what that means uniquely for him or her. In other instances individuals with intellectual disabilities have limited opportunities to be with others who are like them.  When provided with opportunities to interact with other people with disabilities, your son may recognize the value of dating another person with a disability.  If, over time, your son remains negative about others who are like him or struggles with identity issues, seek counseling services. 

I have heard dismal statistics regarding the incidence of sexual abuse among people with intellectual disabilities. Are these statistics accurate? If so, why are the rates so high and what can I do about it?

Although the statistics are highly variable depending on the study you read, virtually all studies illustrate a much higher incidence of sexual exploitation among people with intellectual disabilities when compared to the general population. The reasons for high rates of sexual exploitation are diverse and complex. Societal factors include the denying that individuals with disabilities are sexual human beings and pejorative attitudes about people with disabilities (who would want to abuse them?).  Among individuals with intellectual disabilities there is also considerable ignorance about sexuality, learned helplessness, dependency, conditioned compliance, and isolation and loneliness, all characteristics that contribute to vulnerability. 

As far as the parent’s role in preventing exploitation, there are no magic answers or guarantees. As long as your child is not able to protect himself or herself, you will need to be the protector.  In order to do this you need information so you can be effective in this role.  It’s important to remember the people most likely to exploit your child are individuals your child knows and trusts. Recognizing this fact is critical. As your child grows and matures, you will need to prepare him/her to be his/her own protector.  Teach him/her about his/her body rights, rules associated with private parts and what exploitation is so he/she recognizes it if and when it happens. Help him/her to become assertive with others in everyday life. Creating an environment where sexuality issues can be addressed honestly and openly is helpful as well.  

Can people with Down syndrome get pregnant?

Although there is some evidence of reduced fertility in both males and females with Down syndrome, research has shown that some people with Down syndrome are able to reproduce.  At this time there have been 3 documented cases of males with Down syndrome who have fathered offspring and 30 documented pregnancies involving females with Down syndrome.  Consequently, health professionals advise the use of contraception for individuals with Down syndrome who are sexually active and are not planning to get pregnant.