“What, Why, and How” Model of Parent-Mediated Sexuality Education for Children With Intellectual Disability: An Illustrated Account

Abstract

journals.sagepub.com/home/ssh Sexual health is a broad term that encompasses many aspects of sexuality. The World Health Organization (WHO) defines sexual health as, a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled. 1 All individuals, including those with intellectual disability (ID), have the right to express and enjoy their sexual needs without being abused or exploited. However, in India there is a culture of silence surrounding this aspect of health that leads to what appears like denial of these needs. This has deleterious long-term consequences including a reduction in the likelihood of detecting child sexual abuse. Therefore, sexuality education starting early in life plays an extremely important role not only to inculcate healthy sexual practices but also to promote self-protection and prevent exploitation. It also ensures a better quality of life. Early Childhood Sexuality Education Task Force formulated guidelines for sexuality issues meant for children from birth to 5 years to inculcate right attitudes, values, and behaviors. 2 Education about sexuality is done as a part of life skills training in schools. It also happens in natural environment during conversations with parents and friends. Unfortunately, children with ID do not have adequate opportunities to learn from due to restricted upbringing, lack of resources, and mere denial of needs. In fact, there are perceived notions such as individuals with ID are asexual, 3 and sexuality is something to be feared or controlled. Individuals with ID are sexually active and express their sexual needs in diverse ways just as all other adults. Cognitive limitations should not become barriers to enjoying one's basic rights. As sexuality and exerting sexual rights are critical for individuals with ID, it is recommended that proactive sex education, shared decision-making, and the implementation of sexual health care plans are addressed in the individual support plan. 4 While children with ID have the right to education about sexuality, parents and caregivers are often confronted with the dilemma of what to tell and how to initiate a meaningful discourse. They are also left with very few options especially in the Indian context where the topic is associated with stigma and taboo. Sexual Needs of Children With ID Sexual development is a dynamic and complex process, where biological and social factors interfere with each other. Sexual development and needs vary depending on the severity of ID, underlying cause for ID, and early social experiences. While some children may develop at the same pace as their peers, delay in adolescent sexual development is common and precocious puberty is rare. 5 Moreover, only some features of puberty may be affected depending on various biological factors such as genetic, morphological, constitutional, biochemical, and physiological conditions. 6 Expectations of individuals with ID regarding sexuality and its manifestation Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-Commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).