A 22-year-old autistic young man with low intellectual functioning I work with, recently got into trouble with the police because he was making repeated phone calls to other young men and asking them ‘inappropriate’ questions. In the course of our subsequent therapeutic work together, it took him a while to break down the reasons that were prompting him to do this, and make sense of the feelings of sexual attraction that were involved. From the lens of his ‘concrete’ autistic world and limited intellectual capacity, the bridge between how asking a question about another person’s physical appearance could be linked to his own curiosity and attraction towards other young men’s physicality and how it was trespassing on another person’s boundaries, was a long and arduous one to cross. He needed someone to cross it with him, deciphering the journey and staying at his pace.
The question of addressing the need for sexuality education for children and young people in our country is itself intimidating to parents and educators alike. We still remember the time from our own childhood and teens when the teacher conveniently skipped or merely glossed over the reproductive system chapter in Biology, our mothers explained to us ‘how to handle’ our first period in a hushed voice so as not to let dad overhear, sanitary napkin samples handed out at school became the subject of much covering up and sniggering, and ‘love scenes’ in movies evoked confusing sensations and feelings in us that led to discomfort, shame, and wanting to leave the room. Somehow though, after years spent experiencing some confusion, some fumbling and stumbling and awkward exploration, and finding some trustworthy adults and friends along the way, we managed to make some sense of the bewildering labyrinth of sexuality.
My years of working with children and young people with intellectual or developmental disabilities, however, has made me question how that schema manages to come together for them, given that some of the basic intellectual, social and emotional capacities that brought it all together for some of us, may be missing or simply different. At the same time, the basic curiosity about sexuality and need for sexual exploration, both at the intra- and interpersonal levels, is intact. How, then, do we attempt to ‘bridge this gap’?
- Breaking down the myths. The main reason why young people with special needs are often left out of sexuality education programmes is because they are considered either ‘asexual’, which serves to minimise or deny the need for education or opportunity, or conversely, ‘sexually impulsive’ and ‘out of control’, which makes their behaviour seem uncontrollable and therefore something to be suppressed. Both views take away from the actual reality and need for appropriate channels for information, as well as safe opportunities for exploration, and most importantly, from the fundamental right of every young person, regardless of ability, to understand his or her own development in an accurate and affirming way.
- Assuming automatic learning & synthesis. Apart from exposure, if any, to formal sexuality education in school, most young people acquire knowledge about sexuality through a mix of hit-and-miss strategies through their growing years, including by reading books and magazines, doing internet research, watching condom and sanitary napkin ads on TV, and most importantly, talking to their peers. They then fill in the gaps and synthesise these various sources of information into a meaningful whole over their lifetime. This process of information gathering and synthesis that happens naturally and automatically for most of us, is in many instances not accessible to, or is inadequately developed for children and young people with intellectual or developmental disabilities, and therefore needs to be created externally.
- Prioritising safety. Statistics reveal that children with intellectual and developmental disabilities are one of the populations most vulnerable to sexual abuse. They are often dependent on multiple adults for their care, including toileting and personal hygiene, often isolated from their peers and therefore navigate many social and public environments on their own, have limited understanding of personal and social boundaries and nonverbal cues, and may not be able to verbalise their experiences effectively. All these factors put them at higher risk for sexual abuse and exploitation, making it even more important that we educate them on how to keep themselves safe.
- Deciding what and how to teach. Given the multiple trajectories of social and emotional development that intersect with the development of sexuality, deciding ‘what’ to teach in a sexuality education curriculum is important for any group one is working with. When the target group is young people with intellectual and developmental disabilities, not only the ‘what’ but also the ‘how’ to teach becomes an even bigger point to ponder. Broadening the curriculum to include topics and skills like identifying verbal and nonverbal social cues, making abstract concepts more visual and concrete (rather than assuming they will ‘pick up’ the vibe or ‘intuitively’ be able to discriminate between good/bad touch), teaching personal and social boundaries and correspondingly acceptable behaviours within each, are some ideas to achieve this. Using visual aids, multimedia, handouts of rules, role plays, simulations and scenarios further help to consolidate and generalise the learning to their real life experiences.
- Creating safe opportunities for exploration. While providing appropriate and accurate information is an important piece of the picture, the other is to think about helping our young people identify safe and healthy ways of expressing their sexuality. Talking to them about what they can do when they experience sexual feelings, without being inappropriate or trespassing on another person’s private space, is necessary. This could include exploration of their own bodies and masturbating in private, watching videos and magazines with stimulating but monitored content, and participating in social groups that give them opportunities to meet and socialise with other young people in a safe and structured way.
If you think about it, both disability and sexuality are natural parts of the human experience. And it is both unfair and unrealistic to diminish one in favour of the other. By equipping young people with disabilities with accurate information and choices, we are bringing them that much closer to the responsibilities and norms of adulthood, and a fuller and more personally meaningful participation in the community. At their level and at their pace, yes, but on the premise of full and equal participation nonetheless.
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