Human sexuality encompasses an individual's self-esteem, interpersonal relationships and social experiences relating to dating, marriage and the physical aspects of sex. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, adds to life quality by engendering healthy sexuality, reducing the risk of sexual abuse, avoiding sexual misunderstandings, preventing disease transmission, preventing unwanted pregnancy and alleviating other problems related to sexual function. 
 
 Do Individuals with Down Syndrome Have Sexual Feelings? 
 
 In the past, sexuality was not considered an issue for any people with Down syndrome because of the inaccurate belief that intellectual disability (formerly known as mental retardation) produced permanent childhood. In fact, all people with Down syndrome have sexual feelings and intimacy needs. It is important that expression of these feelings in socially acceptable, age appropriate ways be recognized by families and caregivers. 
 
 Sexuality education is the way to plan for this aspect of adulthood as it applies to independence in educational, social, residential and vocational settings. 
 
 Do Children with Down Syndrome Develop Physically the Same Way as Their Peers in the General Population? 
 
 Children with Down syndrome experience the same sequence of physical and hormonal changes associated with puberty as other children their age. However, there is often a lag in the development of social maturity, emotional self control, social communication, abstract thinking and problem solving abilities. 
 
 Do Children with Down Syndrome Experience the Emotional Upheavals Characteristic of Adolescence? 
 
 The emotional changes characteristic of adolescence are also present in pre-teens and teens with Down syndrome, and may be intensified by social factors. Any adolescent who lives in the community, attends school and is exposed to media inevitably develops an awareness of sexuality. Teenagers and young adults with Down syndrome often express interest in dating, marriage and parenthood. They can be expected to experience typical adolescent changes in mood and outlook. 
 
 What Kind of Sex Education is Appropriate for Individuals with Down Syndrome? 
 
 To be effective, education must be individualized and understandable, focusing not only on the physical reproductive aspects, but with strong attention to decision-making, cultural norms, peer pressures, relationships, social skills and opportunities. Positioning sexuality within the context of community life requires the development of personal values and adult responsibilities. An ideal curriculum will ensure that individuals with Down syndrome understand their bodies, their emotions, their behaviors and their relationships within their social and cultural environment. Information about sexual intercourse, as well as other expressions of adult sexuality, including parenting, should be factual, realistic and stress the importance of personal responsibility and community standards for adult behavior. 
 
 How Can Healthy Sexuality be Encouraged for Individuals with Down Syndrome? 
 
 Creating an environment conducive to healthy sexual expression must be considered in designing educational, vocational, social, recreational and residential programs. Positive sexual awareness can only develop through personal empowerment, self-esteem, understanding of social relationships and personal interaction/communication skills. All these factors influence how intimacy needs are met. 
 
 Do Women with Down Syndrome Have Any Special Needs or Concerns in Regard To Birth Control? 
 
 Approximately 50% of women with Down syndrome are fertile and may use any method of contraception without added medical risk. The method chosen will depend on personal preference, ability to use the contraceptive effectively and possible side effects. Tubal ligation (permanent birth control through surgery) may also be performed without added risk for women with Down syndrome who are in stable medical condition. Many states have laws that control the availability of this procedure to women who have an intellectual or developmental disability. The woman with Down syndrome should be involved as much as possible in decision-making should this option be considered. 
 
 Are There Any Special Needs for Individuals with Down syndrome in Regard to Disease Prevention? 
 
 Men and women with Down syndrome have the same susceptibility to sexually transmitted infections (STIs) as the rest of the population. Use of condoms during sexual intercourse is the best known form of protection against AIDS, herpes and other sexually transmitted infections. Sexual education should include information on sexually transmitted diseases and how to reduce the risk of transmitting them. 
 
 How Can a Person with Down Syndrome Be Protected Against Sexual Abuse? 
 
 It is highly recommended that age-appropriate education in protective behaviors begin in childhood and be reinforced throughout the life of the person with Down syndrome. Individuals with Down syndrome must be taught the boundaries of normal physical interactions in the social sphere, as well as the self-assertion skills to enlist help if necessary. Practicing assertive behaviors and designating trusted individuals in settings that are frequented with whom to discuss or report questionable activities are important aspects of abuse prevention training. 
 
 Do Girls and Women with Down Syndrome Have Normal Menstrual Periods? 
 
 Menstruation for girls and women with Down syndrome is no different than for their peers in the general population. On the average, they begin menstruating at age 12 1/2, but may begin as early as age 10 or as late as age 14. Most girls and women with Down syndrome have regular cycles with the same minor irregularities typical of their age peer group. 
 
 
 
 Alterations in a previously regular cycle may be due to the normal process of aging, or may be a sign of emerging hyperthyroidism. Ongoing irregularity of menstrual cycle, significant pain during menstruation or extreme pre-menstrual symptoms warrant medical examination. 
 
 If a Woman with Down Syndrome Becomes Pregnant, Will the Baby Have Down Syndrome? 
 
 At least half of all women with Down syndrome do ovulate and are fertile. Between 35 and 50 percent of children born to mothers with Down syndrome are likely to have trisomy 21 or other developmental disabilities. 
 
 When is the onset of menopause for women with Down syndrome? 
 
 Menopause may occur at a wide range of ages. Typically it takes place after age 40. 
 
 Are Males with Down Syndrome Fertile? 
 
 Scientific information about the fertility of men with Down syndrome is limited. There have been at least three documented cases where the paternity of a man with Down syndrome was confirmed. It is likely that additional cases will be recognized - especially since more men with Down syndrome have an increased life expectancy, have the opportunity to live in the community, receive treatment for physical and sensory impairments, receive optimum nutrition, and develop intimate relationships. It is not known if the offspring of men with Down syndrome are more likely to have Down syndrome. 
 
 It does seem clear that, in general, men with Down syndrome have a significantly lower overall fertility rate than that of other men of comparable ages. An individual's status can be partially assessed by having a semen analysis (sperm count) done, but this may not be definitive. Contraception should always be used, unless a couple has decided upon parenthood. 
 
 Do Boys with Down Syndrome Mature Later Than Their Peer Group In the General Population? 
 
 The onset of puberty in boys may be slightly delayed, but this is not a major factor. Genital anatomy is comparable to that of boys who do not have Down syndrome. 
 
 *** 
 
 NDSS thanks special guest author Leslie Walker Hirsch, M.Ed. 
 
 NDSS Resources 
 
 External Resources 
 
 American Association of Sexuality Educators, Counselors and Therapists ( AASECT) 
 
 www.aasect.org 
 
 Promotes an understanding of human sexuality and healthy sexual behavior; website contains a searchable list of certified professionals 
 
 www.aasect.org Promotes an understanding of human sexuality and healthy sexual behavior; website contains a searchable list of certified professionals American Association on Intellectual and Developmental Disabilities 
 
 www.aaidd.org 
 
 Contains articles on sexuality and intellectual disability 
 
 Center for Parent Resources (CPIR) 
 
 www.parentcenterhub.org 
 
 Offers information on pre-adolescents and teens with disabilities 
 
 Health Promotion for Women with Disabilities 
 
 nurseweb.villanova.edu/womenwithdisabilities 
 
 Offers resources on women's issues for women with disabilities. 
 
 nurseweb.villanova.edu/womenwithdisabilities Offers resources on women's issues for women with disabilities. Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities 
 
 ici.umn.edu/products/impact/232 
 
 Contains articles offering perspectives and information; published by the Institute on Community Integration, University of Minnesota 
 
 ici.umn.edu/products/impact/232 Contains articles offering perspectives and information; published by the Institute on Community Integration, University of Minnesota Planned Parenthood Federation of America 
 
 www.plannedparenthood.org 
 
 Often supports, through affiliates, educators trained to design and implement sexuality programming for individuals with intellectual disabilities 
 
 www.plannedparenthood.org Often supports, through affiliates, educators trained to design and implement sexuality programming for individuals with intellectual disabilities Sexuality Information and Education Council of the United States (SIECUS) 
 
 www.siecus.org 
 
 Provides broad information and advocacy on sexuality issues, sexual health and sexual rights 
 
 www.siecus.org Provides broad information and advocacy on sexuality issues, sexual health and sexual rights Sexual Health Network - TSHN 
 
 mitchelltepper.com/sexual-health-network 
 
 Offers articles and blog posts on disability and sexuality 
 
 mitchelltepper.com/sexual-health-network Offers articles and blog posts on disability and sexuality Leslie Walker-Hirsch, M. Ed., FAAIDD 
 
 www.lesliewalker-hirsch.com 
 
 Creator of the Circles program of teaching social boundaries to individuals with intellectual disabilities 
 
 BOOKS ||||| Couple with Down syndrome fights for parenting dream 
 
 Updated 
 
 A young couple with Down syndrome say they are ready for babies and marriage, despite the pleas from their concerned parents, who doubt their children are emotionally and physically ready. 
 
 All parents want to see their children marry happily and start a family. But when the couple has Down syndrome, the situation is profoundly complex. 
 
 Michael Cox and Taylor Anderton have been dating for almost two years and engaged for one. 
 
 The Queensland couple burst into the national spotlight in May when an ABC news video about their romance was viewed online more than 13 million times. 
 
 Michael and Taylor's parents have recognised the pair are happy together, but said they cannot support their dream of starting a family. 
 
 "Taylor and Michael want to get married and have children and that makes me feel very worried, apprehensive and concerned," Taylor's mother, Catherine Musk, told Australian Story. 
 
 "It's not going to happen; it can't happen." 
 
 The parents have raised their children to believe they can achieve their dreams, but now they worry they have fostered unrealistic expectations. 
 
 "I don't see parenthood being something that they're going to achieve, or really they probably should achieve," Michael's father Simon Cox said. 
 
 "It would be very difficult being a child whose parents both had Down syndrome and couldn't have a job and couldn't drive a car and couldn't understand maths homework and those sorts of things." 
 
 Michael and Taylor have agreed to delay their wedding, but remain determined to eventually have children. 
 
 "We want to have four kids," Michael said. 
 
 "We're going to have three daughters and one son. 
 
 "It's not that hard to have a kid. I know that some people say it's all about hard work but it's not — it's all about love and compassion that you have for your child." 
 
 'Their bodies, their choice' 
 
 
 
 Disability advocates said the decision on parenthood should rest with the couple. 
 
 Queensland Advocacy Incorporated director Michelle O'Flynn said people with disabilities were entitled to "bodily integrity". 
 
 Down syndrome Q and A 
 
 What is Down syndrome? 
 
 People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21. It is unknown why this happens and it can occur across all ethnic and social groups. 
 
 
 
 How many people have Down syndrome? 
 
 One of every 700 to 900 babies born worldwide will have Down syndrome, although this number is lower in Australia with about 270 babies born each year with Down syndrome. About 70 per cent of babies with Down syndrome are born to mothers under 35. 
 
 
 
 What are the health issues? 
 
 Often lower general immunity which makes them more susceptible to infections and common illnesses. They also have a higher than average incidence of heart and respiratory conditions. 
 
 
 
 Can a couple with Down syndrome have children? 
 
 It is often difficult for a couple with Down syndrome to conceive a child due to low fertility in the male and lack of ovulation in the female and the likelihood of entering menopause early. 
 
 
 
 Will a couple with Down syndrome have a baby with Down syndrome? 
 
 If a woman with Down syndrome does fall pregnant, the chance of her having a child with Down syndrome or trisomy 21 is about 50-50. Data on instances is rare. 
 
 
 
 Source: Down Syndrome Australia, Down Syndrome Association Queensland and medical geneticist Dr Michael Gattas from Brisbane Genetics 
 
 "People … like Michael and Taylor are certainly entitled to the freedom to do with their bodies as they wish and that includes reproduction," she said. 
 
 "They have the same rights as everybody else. The fact that they have a disability doesn't diminish that." 
 
 Ms O'Flynn said rather than stand in the couple's way, it would be better to direct energy and resources into helping them fulfil their goal. 
 
 "We don't ask other parents in the community: 'are you good enough to raise your child?', and this shouldn't be prejudging how a person with an intellectual impairment parents their children," she said. 
 
 Feeling out of their depth, Michael and Taylor's families sought professional guidance on how to manage their fears and the couple's expectations. 
 
 "How can I stop it?" Ms Musk said. 
 
 "Do I go talk to a specialist, do I talk to a GP and see what the options are? I don't know — I don't know what our rights are and what her rights are." 
 
 Ms O'Flynn said the parents could attempt to secure an order for sterilisation. 
 
 "It is really something completely abhorrent to most of us," she said. 
 
 "I would say that they would have no chance of winning that because it's quite likely that Michael and Taylor would be proven to have capacity." 
 
 Medical geneticist Michael Gattas from Brisbane Genetics said the chances of a couple with Down syndrome falling pregnant were rare and he had never seen a case at his practice. 
 
 He said if a couple with Down syndrome were to fall pregnant, they would have about a 50-50 chance of having a child with Down syndrome. 
 
 Dr Gattas said data on the number of Down syndrome children born from parents who have the condition was slim. 
 
 Genetic Health Queensland director Julie McGaughran said if both parents had Down syndrome, there was a "high chance" in each pregnancy that a child will have Down syndrome. 
 
 Parents left to 'pick up the pieces' 
 
 Michael and Taylor said they were confident they would make great parents. 
 
 But their parents said they worried about the responsibility that would fall on them if Taylor and Michael did start a family. 
 
 "The advocates will tell us that we should just allow Michael and Taylor to have the same rights as their siblings and we just don't agree," Mr Cox said. 
 
 "They're not the ones picking up the pieces." 
 
 
 
 Taylor's stepfather Gavin Musk said it was likely he and the other parents would become the "grandparents playing a major role in the upbringing of that child". 
 
 "Then we've got to say: 'do we want to be in a position to do that?', because we are not going to be around forever to make those decisions," he said. 
 
 Michael and Taylor's parents said they did not want to force their children to change their plans. 
 
 "It's really important we don't get too panicky because I get frightened that the kids are going to feel like we're sitting on the other side of the fence," Michael's mother, Nikki Cox, said. 
 
 "I'm hoping that as they grow and as they learn they come to understand some of the things that we understand about the issue." 
 
 "Rather than be the ones to tell them: 'this is what's best for you', bring them along with us and see if we can get them to come to that same conclusion. So that decision is theirs — they own that then." 
 
 Never giving up on the dream 
 
 Michael's father said the families chose to talk to Australian Story as they confronted their dilemma to help others facing the same complex issues. 
 
 "If by telling the story we can, as the six of us, uncover things that we need to learn and if one other family can benefit from this experience it's going to be fabulous," Mr Cox said. 
 
 Michael and Taylor, however, are not ready to give up their dream. 
 
 "I know that their heart is in the right place, but being over-protective is strictly not on with your child, even if they have a disability or not," Michael said. 
 
 "I know that me and Taylor have the skills to be married and to start our own family." 
 
 Watch Australian Story's "Tough Love". 
 
 Topics: disabilities, human-interest, relationships, family-and-children, marriage, brisbane-4000 
 
 First posted
– Michael Cox and Taylor Anderton just want to tie the knot, have four kids, and enjoy the rest of their lives together, but their families are balking at the second part of the young Australian couple's plan. Not because they're in a Montague-and-Capulet-style feud, but because they worry Cox and Anderton—dating for nearly two years, engaged for almost one—won't be able to handle parental responsibilities, since they both have Down syndrome, Australia Story reports. "That makes me feel very worried, apprehensive, and concerned," Anderton's mom says, and Cox's dad agrees: "I don't see parenthood being something that they're going to achieve, or really they probably should achieve." He notes it would be "very difficult" for the couple to handle not only day-to-day activities such as having jobs and driving, but also parenting skills such as helping out with homework and dealing with adolescent issues. The couple gained recognition in May when a clip about them aired on ABC Australia. A geneticist tells Australia Story a couple with Down syndrome becoming pregnant is a rarity, and that if they did conceive, chances would be about 50-50 they'd have a child with Down syndrome. Michelle O'Flynn, director of Queensland Advocacy Inc., notes the couple's parents could try to block a pregnancy by getting a sterilization order, though she says they'd probably fail and that that option is "abhorrent." Disability advocates like O'Flynn say it's Cox and Anderton's right to retain "bodily integrity" and reproduce if they want. But Cox's dad dismisses that, noting, "[The advocates are] not the ones picking up the pieces." Michael Cox understands their parents' concern, noting, "Their heart is in the right place," but he says they're "overprotective." (A Nova Scotia dad calls his son's Down syndrome "beautiful.")