I my experience, individuals with cognitive and/or communication disabilities do not receive any attention to their sexual system as they are growing up. There is a lot of attention to other things, sometimes even including the reproductive system, CNS (central nervous system) including the cognitive system, but not much to their psychological well-being, unfortunately.
As they are growing up, there are many demands on parents to help children with FASD or on the FAS Spectrum, as well as parents with children with other disabilities, including taking care of their hygiene needs long after their age peers have mastered tooth-brushing, etc. However, providing information and guidance about changes in the body during puberty are often not discussed, inadvertently contributing to traumas the children experience.
Two quick examples are the little girls who believe they are dying when their menses begins, as no one has ever informed them about the normalcy of menstruation. One little girl who I knew before her first menstruation had a mother who had told her about the internal and external changes that occur in the body as we change from childhood to adulthood. One day I received a very excited telephone call from her. She excitedly and proudly announced that she had her very first menstrual period, and now she is entering adulthood and we should have a party to celebrate! So we did!
The second is of a little boy on the Autism Spectrum who had an erection while at school in the boys bathroom. He could not urinate. He was terrified that his penis had broken. He ran crying to his teacher, holding his penis in his hand, fearing his body had failed him. Imagine how much better that experience could have been for him had his parents explained normal bodily functions.
There are many stories like this on this topic, on the failure of parents to inform their children of the ways the body changes on the way to adulthood, that changes come at different times for each child, and that we can celebrate the changes when they occur.
In addition to providing information about the body itself, teens and young adults must receive information about how, when, where, and with whom they can share sexual pleasuring. There are social niceties to be sure, but even more important are legal prohibitions. Children, teens and young adults must be taught clearly, directly, explicitly exactly what one is allowed to do to oneself and with others sexually. About privacy, about who is allowed to touch whom, about permission to touch, or show oneself, and asking to see other’s genitals or other sexual body parts.
I do not use the term “private parts”. I am a literal thinker and figure if there are private parts then the rest must be public parts. The issue in the generic community is that specific permission must be obtained before touching the private parts of another person, but frankly, I don’t like people just touching me because they can reach! I prefer people to ask permission. My body is not public property! I have a sense of bodily integrity, that my body belongs only to me. To separate out the parts that are mine and the parts that others can touch is too complex. I like the idea of personal integrity and choice. That’s why I use the term sexual body parts, to identify exactly what they are. And, those are different (different purpose) than reproductive body parts. It is a different system with a different although related purpose. One is for reproduction, one is for pleasure. Although they go hand in hand, they are different.
I co-wrote the book to which David Boulding refers, “The Rules of Sex: For Those Who Have Never Been Told” to begin a campaign for sex education BEFORE or even better, WITHOUT the justice system being involved. I have had too many clients charged with victimless crimes (usually public masturbation) who wind up in court, and the court refers them to my diversion program where they are finally provided the information they should have had and with which they would never have wound up in jail.
Taking the laws in the State of California from the Penal Code, Welfare and Institutions Code, Health Code as well as California’s Constitution and the U.S. Constitution, we wrote the book to describe in detail what one is not allowed to do, what one is allowed to do, and how to know the difference. When we completed the book, we decided we were missing some essential information, including social mores, values, and religious perspectives on sexuality.
I then sent the book around to several types of professionals: police and sheriff, prosecutors, defense attorneys, individuals with developmental disabilities and/or their parents, disability advocacy specialists. I wanted to be sure the book was legally accurate, factually accurate, easy to understand for the reader with learning disabilities and fully accessible for parents, counselors, probation officers and others. It was then revised and made available. Requests for translation to Spanish were quick to appear, so we translated the book into Spanish.
I know that had Aaron Hart’s parents read this book and read it and explained it to their son, he would not have wound up with a 100 year prison sentence for taking his neighbor friend to the garage and doing a little “let’s play doctor” and “let’s try this”. At just 18 years of age, this young man with moderate mental retardation, was “doing what comes naturally”, while the law says, “ignorance of the law is no excuse” for breaking the law. It breaks my heart.
I believe that ignorance is not bliss but rather creates opportunity for those with developmental disabilities to find themselves in trouble for reasons about which they have no idea.
I remember clearly one client who I saw a couple of days after he was released from jail on bail. I had read the papers, he was charged with sodomy. I asked him what he had been arrested for. He said, “they said sodomy”. I asked, “what does that mean”? He said, “I don’t know”. There are several definitions of sodomy but he knew none of them. He did not know why he had been arrested. He had gone to play basketball with his neighborhood friends like always, but this day, the cops came and all the rest ran away and were not caught in the bathroom where they were playing their usual bathroom games. Sound familiar? The guy with disabilities being the only one caught, the only one arrested, processed through a court proceeding that was embarrassing and humiliating for him and his family?
That’s why I believe it is the responsibility of the parents, the schools, and the disability support services agencies to ensure that education about sexual conduct is essential. Not only for the reasons detailed above, but also to give them a vocabulary and information that allow them to identify and report sexual abuse when that happens.
You can purchase the book from my website: http://www.norabaladerian.com/books.htm Your options are to purchase the printed book or to order a PDF copy that you can download yourself.
I would love to hear your thoughts about this topic. And, kudos to David Boulding for his article on the topic of “The Rules of Sex.” (http://rffada.org/2011/04/david-boulding-rules-of-sex/)