Author(s): Michelle Beltran Beltran
Each person typically inherits 23 pairs of chromosomes, totaling 46, obtained from both the father and the mother. However, in the case of individuals with Down syndrome or intellectual disability, there is an additional copy of chromosome 21 (Figure 1). These chromosomes are small packages of genes in the organism that play a fundamental role in the formation of the fetus’s body during pregnancy. It is estimated that in 95% of cases, there is a maternal predisposition, which is mainly attributed to the advanced age of the woman during conception.
The Down syndrome occurs when there is an extra full or partial copy of chromosome 21 during cell division. This additional genetic material brings about changes in development and physical characteristics associated with the syndrome. It was Langdon Down who identified Down syndrome in 1866, and to this day, no cure has been found for this condition. After birth, it is crucial to provide specific care and ensure an adequate quality of life for optimal personal and intellectual development of the individual [1].
Sexuality can be defined in various ways. Initially, we understand it as the anatomical, physiological, and psychological conditions that distinguish each sex. On the other hand, the World Health Organization (WHO) describes it as sexual relationships, eroticism, intimacy, and pleasure. Sexuality is experienced and expressed through thoughts, actions, desires, and fantasies. From the prenatal period, when the sex of the fetus is determined, we begin to develop our sexuality. At birth, we enter stages of psychosexual development, as described by Freud, which we go through during our growth.
Psychosexual development, according to Freud, is divided into several stages. First, we have the oral stage, which spans from birth to approximately 18 months. During this stage, the baby relies on others to fulfill their biological needs and experiences pleasure through feeding. This stage is crucial for establishing dependencies, independence, trust, and support in others [2].
Secondly, we have the anal stage, which lasts from 18 months to 3 years. During this stage, the child begins to learn to control their excretory functions and starts to explore their own body. Freud suggests that this stage is crucial for the development of self-control, positive self-esteem, and creativity.
The third stage is the phallic stage (Oedipus complex and Electra complex), which spans from 3 to 6 years old. During this phase, the child begins to show interest in their genitals and topics related to sexuality. Although their understanding of the subject is usually limited and often incorrect, Freud argues that children comprehend more than their parents typically assume, possibly influenced by what they see in the media or explanations from older siblings or parents. Freud links this stage with the Greek tragedy of Oedipus Rex, where the protagonist, Oedipus, accidentally kills his father and then enters an incestuous relationship with his mother, leading to tragedy. In this stage, the child tends to identify with the parent of the opposite sex and reject the one of the same sex.
The fourth stage is the latency stage, which lasts from around 6 or 7 years old until the beginning of adolescence. During this period, the child’s libido is directed towards social activities such as sports, art, and interaction with school peers. Although the sexual instinct may seem to be dormant, Freud suggests that this stage is crucial for the development of various aspects of the child’s personality such as:
Sexuality can be approached in various ways. From sexual acts such as intercourse or masturbation, to sexual behavior, which can be manifested in flirtatious attitudes, specific clothing choices, or the use of perfumes [3]. The sexuality of individuals with Down syndrome is distinguished by its uniqueness and is often perceived as lacking understanding. Each family may have different perceptions on this issue, which can lead to divergent ideas or even speculations about how individuals with intellectual disabilities understand sexuality. A common mistake is to consider these individuals as perpetually childish, both in their personality traits and in their sexuality. However, it is crucial for individuals with Down syndrome to learn to manage their impulses and emotions, as their sexual development follows a similar course. While it is true that they may face difficulties in controlling themselves or giving up their desires, this demands significant effort to help them understand which behaviors are not socially acceptable. Nevertheless, this does not imply that they lack the capacity for self-control. This is where the role of parents comes into play, who must address and discuss any topic in an appropriate, healthy, and understandable manner for their children. Although it may be challenging, this task is not impossible.
In one of Rubio’s works (1984), it is stated and cited ‘that human sexuality arises from the integration of four human potentialities, which give rise to the four sexual holons (subsystems): gender, eroticism, reproductive, and interpersonal affective bonding.’ These dimensions are also often experienced by individuals with intellectual disabilities.
It is crucial to remember that individuals with Down syndrome have the ability to reproduce and exercise their sexual rights. Therefore, it is essential to emphasize the importance of education and information on these matters. Both family support and societal support are crucial to ensure that this education is provided from an early age, which will contribute to more effective and optimal intellectual development [1].
Individuals with Down syndrome is an integral part of sexual diversity and have the capacity to live their sexuality in their own authentic way. As Martínez Agudelo (2022) indicates, this involves exploring their sexual diversity and recognizing themselves in terms of their gender identity, whether as male, female, or another gender identity.
There are certain perceptions or beliefs suggesting that individuals with disabilities do not experience erotic interest towards others or are not perceived as attractive. However, as we know, they are ordinary individuals who experience emotional and sexual development like that of anyone else. This brings us to the topic of the first orgasm and how it is experienced. Masturbation is a common example, practiced by many young people from the age of fifteen or even earlier. In the case of individuals with Down syndrome, it could be equally common to experience sensations of pleasure when touching their own intimate parts. However, there is a myth circulating around this topic, suggesting that masturbation is the only form of sexual activity or intimacy that individuals with Down syndrome typically engage in [4].
In the case of males, this behavior may be more evident and manifested in any setting. There is a misconception that women with Down syndrome passively accept sexual contact with any man and are promiscuous, possibly more seductive. These ideas raise questions about these individuals’ ability to control themselves [4]. It is considered important to avoid situations that may trigger sexual impulses, and in some cases, parents take extreme measures to supervise and control the actions of their children with Down syndrome. However, it is important to recognize that there are circumstances in which it is extremely difficult to control such behaviors. Each person with an intellectual disability responds uniquely to stimuli in their environment. Addressing this issue often presents challenges for many families, whether they have members with Down syndrome or not. Difficulties may arise due to religious beliefs or ingrained moral stigmas [3]. In some cases, it may be perceived as inappropriate behavior, leading to the repression of sexual desires, feelings of guilt, or insecurities. For this reason, healthy and appropriate sexual education is recommended. According to Garvia & Miquel, it is important for these individuals to be able to exercise their sexuality appropriately [4].
This aspect focuses on the emotional relationship established with a partner. Various studies indicate that such relationships are influenced by the emotional development of everyone [1]. This development is influenced by early interactions with the environment, both within the family and socially (including behavior outside the home). These feelings and emotions characterize and persist over a period, reflecting a series of attitudes towards others [1].
We can conclude that individuals with Down syndrome can enjoy a healthy and fulfilling sexuality if they receive proper guidance. They have the capacity to form a family and live a full sexual life, just like anyone else. According to various authors, education on this topic should begin within the family, continue in educational institutions, and be supported by society. This will allow for a natural approach to sexuality, enabling these individuals to enjoy their sexuality without taboos, with respect, and without prejudice. Sex is an integral part of life, and it makes no sense to conceal it [5,6]. It is crucial for society not only to acquire knowledge but also to respect and promote the right to sexual education and the exercise of sexuality for people with intellectual disabilities. It is essential to always convey this message clearly and without discrimination.
