Managing sexuality in autistic teenagers

Anita* called me up for a cup of coffee. She said it was urgent. For Anita, everything needing advice regarding her lovely son Sean* is always urgent! She promised a slice of blueberry cake to boot, and I was bought. 

Coffee turned into dinner as I was delayed at work, but she patiently waited. After the usual pleasantries, she got down to business as we waited for the food. Sean had just turned 13. It has been quite the journey for their family. As their second baby, Sean was different from birth. Anita worried endlessly until the paediatrician put a name to it; Sean had Autism Spectrum disorder (ASD). 

Anita and her husband went through a tough acceptance period for months, before throwing themselves into seeking solutions. They sought multiple opinions about Sean’s condition, not just locally, but also abroad. They couldn’t change the diagnosis, but along the way, they changed how they chose to address their child’s condition. 

It had been more than a decade of learning for the family, including Alisha*, the older sister; but it has been rewarding and fulfilling. Sean may still be quite dependent but he has Karen*, a great caregiver who loves him; and a family that accepts him and supports him. He goes to school for six hours every day and enjoys it, and is learning plenty. 

Anita fawned over Sean for years, at the expense of her own life, before accepting that Sean would do just fine with a bit more space. She finally went back to work full time and was now travelling a bit, confident that Sean would be just fine with Karen and his daddy. Even Alisha has gone off to college. 

So, you can imagine her surprise when Karen asked to speak with her about Sean, soon after she had come back home after a week out of town for a workshop. Karen was never reserved about airing her opinion with regard to what was best for Sean. But this time round, she seemed to be struggling to find the right words. 

Karen reported that in the recent weeks, she had noted that Sean had started exhibiting inappropriate sexual behaviour. Some mornings, it was hard to get Sean to focus on getting ready for school because he would rather stay in bed and masturbate. He also seemed a lot more preoccupied with his penis and would lose track of time fondling himself. 

Karen noted that Sean did not seem to realise that this behaviour was inappropriate in public. She worried about him going off in school, creating a scene or even worse, crossing the line with the other children. She did not know how to get him to stop. 

Anita was distraught! Despite the fact that the family had undergone lots of therapy to learn how best to care for Sean, allowing him to grow and develop independence in line with his abilities; deep down, to Anita, Sean would always remain her baby. Though he was now a teenager, Sean’s capabilities were still at the level of a five-year old at best. He could read simple words, follow instructions, use the toilet independently and was very good at creating things with his hands.

Like all other children, Sean had finally hit puberty. I pointed this out to Anita, and this made her face fall even more. She looked like she wanted to run home, bundle Sean into a blanket and protect him from growing up! She had raised a teenage girl, and nothing prepared her for raising a teenage boy; especially one she could not stop regarding as her little baby. 

What was happening to Sean is not unusual. Despite having ASD, the rest of the developmental stages do take place as expected. Puberty comes with the whole lot of changes for boys and girls, physically, sexually, and psychologically. For the adolescent with ASD, they are less likely to struggle with body image and self-consciousness; but on the other hand, they are less inhibited with regard to expressing their sexual desires. 

This disinhibition is a result of their inability to perceive their actions as socially inappropriate. They are not aware of the discomfort they are causing to others because they lack capacity to read the unspoken cues from others around them, denoting the inappropriateness of the action. This means that they not only cause others awkwardness but they may also inadvertently cross the line and perform actions on others that can get them into trouble for sexual harassment. 

Learning appropriate social behaviour and response is the mainstay of behaviour therapy in autism care. This is to empower those on the spectrum with skills to navigate the world as best as possible. Unfortunately, for many of them, behaviour therapy with regard to sexual and reproductive health is often ignored as they are rarely thought of as sexual beings. This comes from parents, therapists and even the healthcare providers.

Management of puberty and adolescent phase is critical and must be intentional. The person on the spectrum requires assessment to understand their level of independence, decision-making and functionality. It is on this basis that one is able to determine how to package the information they need; and how much behaviour therapy can impact modification of their sexual expression. 

Sexual needs

For persons living with ASD, they require behaviour modification to direct them towards a more private expression of their sexual needs; to learn not to do so in public and to teach them about respecting other people’s boundaries. They must be allowed to seek sexual fulfilment safely through masturbation, as for most of them, this may be the only form of sexual fulfillment they may get throughout their lives. 

It is important to recognise that people living with ASD have difficulty relating with others. They have a challenge appreciating their own feelings, and as a result, do not have the means to express it. Therefore, even in adult age, they may lack capacity to consent to romantic relationships, because these are hinged on love, care and trust; feelings that the person may not even know they possess, in order to decide if they want to be involved or not.

Where behaviour therapy may fail to yield results, medical treatments have been suggested, that aim to knock off the sexual desire or libido, as a means of controlling the inappropriate expression. Suggested medications with low risk include certain antidepressants that lower libido over prolonged use. The response to these drugs is unpredictable and may still not work for many. 

The luteinising hormone releasing hormone (LRHR) argonists are drugs that suppress the production of testosterone in males, thereby suppressing sexual desire. This has been proven to be effective, and in some legal systems, is used as medical castration for paedophiles. 

However, in this setup, it is difficult to justify the use of this drug because of the adverse effects on adolescents. The testosterone is responsible for development by supporting the increase in bone length and density, increasing muscle mass while reducing baby fat, and the pubertal growth spurt. Using LHRH agonists in puberty and adolescents inhibits normal development for the growing child. 

Anita took the cautious path of therapy for Sean, and with time, it did begin to bear fruit. Sean is better able to manage his sexual urges, avoiding the social awkwardness. However, it has also been a steep learning curve for Anita, to transition into the mother of an adolescent on the spectrum, rather than a child on the spectrum!