At the 3rd international conference on 22q11 in Barcelona, Eva Micol (Université de Genève) presented her works on sexuality in the 22q11.2DS.
Sexuality is a major concern among parents of young people with microdeletion 22q11, but it has never been the object of a scientific publication.
Studies on sexuality of children, adolescents and adults with intellectual disabilities or cognitive difficulties suggest a high risk of physical, emotional and sexual abuse, a lack of knowledge leading to an inability to consent to a sexual relationship (36% think that someone else decides whether or not they have sex), and a higher risk of contracting an STD or having a pregnancy.
In a study with 81 participants (45 22q11 and 36 control group), the researchers showed that 22q11 individuals have fewer social interactions, and particularly fewer intimate relationships. 22q11 also tend to have less knowledge about sexual intercourse but are more interested in knowing more about it. 25% of 22q11 individuals did not know how to react in front of a sexual abuse threat.
The researchers stress the crucial role of parents in the sexual education of their children (about STD, pregnancies, abuse and responding with inappropriate behavior). Sexual education that is individualized and appropriate to their developmental age and level of comprehension, preferably with visual and realistic aids.
“We have already intercepted SMS messages and Facebook conversations, setting appointments for unknown people after classes to have sex in public toilets or in the person. We talked about it with our son, and he assured us that it did not happen. However, he remains obsessed with this idea. Does his lack of discernment have anything to do with his illness? How can we protect him and respect his intimacy ? ” (source: “J’élève un enfant pas comme les autres” – Stephan Eliez)