Helping People with Intellectual or Developmental Disabilities Learn “The Rules of Sex”

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/)

20/20 Show Should Have Condemned Law Enforcement, Not Facilitated Communication

Last night I watched the 20/20 program which purported to be an “investigative report” on the use of Facilitated Communication, and how using this method of communication, an entire family’s life was torn apart.

The one hour program showed footage of a Michigan family. Their then 14 year-old daughter who has autism was said to have disclosed that her father sexually molested her and that her brother had seen this happen.

They showed the girl being interviewed in a typical CAC – type interview setting (Child Advocacy Center). These Centers began in the early 90’s to address a very serious problem. Suspected child abuse victims were being interviewed on average over 20 times by different responders including patrol, Child Protective Services (CPS) emergency personnel, then a variety of police officers (detective, child abuse detail officers), CPS specialists, medical personnel, etc.

To fix this problem CAC’s were developed to ensure one interview (or more if needed) with one interviewer, while the other critical partners (law enforcement, CPS, prosecution) viewed the interview from another room behind a one-way mirror. They could send questions to the interviewer to ask. Thus the investigative needs of all relevant agencies could be met without traumatizing the child. Then grew a new profession: child abuse forensic interviewers. These were carefully trained individuals, who usually are required to complete a 40-hour course in order to be certified for this work.

In the case of this child, the interview was videotaped, and the positioning of the camera showed only the back of the interviewer (there probably was another camera somewhere so that her face was shown), the child and the communication facilitator.

The narrator began a description of FC that does not fit with all I have learnt about FC, although I have heard it said before. He said that Facilitated Communication is a therapy for children unable to speak. As a psychologist, I perhaps have a different and clearer understanding of what therapy does. Therapy helps individuals obtain relief from distressing situations…marital conflict, depression, anxiety, PTSD, etc. However, FC is not designed for relief from distressing situations. Facilitated Communication allows individuals who cannot use spoken or written language without assistance, to be able to type with the physical assistance of a trained communication support person. I have often, however, treated individuals who use FC to communicate. But, that is not therapy. So, I disagree with the program when they assert that FC is a therapy.

Next, the narrator states that the facilitator for this suspected child abuse forensic interview had only had one hour of FC training. One hour? Now, I do not mind that she had completed one hour of training, but that certainly does not qualify her to provide services to anyone! One hour? I recently attended several conferences that included information about FC and I came away with the fact that it takes at least one year to master the skills of FC, and that ongoing skill building is an important aspect of supporting individuals who use FC. There is a protocol to be followed, there are standards of practice, there is so much to be learned about FC, that even I know one hour of training is completely inadequate and inappropriate.

In July of 2011, I joined hundreds of others in Boston at MIT where the Summer Institute on Communication and Inclusion was held. I attended this 3-day conference where many aspects of FC were discussed. I learned that as many different people as there are, there are different types of support required, and it is up to the facilitator to learn these variations, and to be flexible with the different persons whom they will support.

Frankly, after learning that the facilitator approved by the CAC team to work with the alleged child abuse victim had only had one hour of training, I was completely shocked. I asked myself, what other member of the child abuse response team had only had one hour of training for the job? The prosecutor? No. The forensic interviewer? No. The police officers? No. How about the camera operator? No. Perhaps the individuals who built the interview room? No. Maybe the….well, I just could not think of anyone in such a critical position that the law enforcement community would approve that had one hour of job training.

The narrator goes on to say many things to negate the appropriate use of Facilitated Communication. They show the titles of many articles that deny the efficacy of FC…which are flawed studies with flawed methods that of course result in flawed findings. The show had an obvious bias against the use of FC.

But FC was not the problem, in my mind. FC was blamed for the system’s failure. It was later revealed that the facilitator with one hour of training had manipulated the child’s communication. The accusations of the alleged victim were a complete fabrication. Yet the law enforcement community maintained that they had “done their job” and were not responsible for the obvious errors in responding to the initial report. It is not FC that caused the problems. It was the law enforcement community who had not done due diligence in learning about how FC actually works, how FC actually is conducted, and adhering to the Standards of Practice.

It seems to me that anyone listening to the narrator say that the law enforcement community allowed someone with one hour of training to basically be the foundation of this case, would say, “what is the matter with them?” However, the focus was not on the failure of the system, it was on the method of communication used by the child.

I guess that’s one way to “redirect” blame for one’s failures. But it is not the right way. Law enforcement: get it together! Get training in place for all of your personnel about individuals with disabilities, including those who use augmentative and assistive technology. And, make sure, that you get more than one-hour of training. One hour doesn’t come near the amount of time required to work with suspected child abuse victims at any level.

At the end of the show, the reporter is basically chasing after the woman who did the facilitated communication during that disastrous interview. She would not stop to talk to the reporter. He said, she is now working at a retail store in sales. I guess the show felt it was important to say that. I’m sure there is an underlying message there. I think they wanted the viewer to think, “Oh, she tried a career in FC but since FC is a farce, she has worked her way up the career ladder to retail sales.” Whatever that means. What it means to me was that she was likely so scarred by her experience, and by her (IMHO) wrong decision to take on a responsibility for which she was woefully and obviously unprepared, that she found employment in a much safer environment.

So, I am left with the question, what was the motivation of 20/20 to do this “expose”, which is only an expose of the failures of the criminal justice system, and not the failure of FC as a method of communication? I suppose I could write to them and ask. What was their objective? What did they want to achieve? And, I would want to know if they think they achieved it. Again, it left me with the information I had suspected all along, knowing of this case from years ago. That the training needed by those responding to suspected child abuse victims with disabilities was not in place. They responded flooded with ignorance, and not with information. Information that was available to them at the time. And now even more information is available to them. For free!

The two law enforcement training DVD’s that my team at the Arc of Riverside County (in California) produced under a grant from the U.S Department of Justice, Office for Victims of Crime could have helped them. These are: VICTIMS WITH DISABILITIES: THE FORENSIC INTERVIEW, and VICTIMS WITH DISABILITIES: MULTIDISCIPLINARY, COLLABORATIVE FIRST RESPONSE. These DVD’s and the accompanying training guides, provide essential basic information on how to best work with suspected crime victims with disabilities. How to effectively intervene when individuals use augmentative or assistive technology to communicate is described. Had those criminal justice professionals involved with the Michigan case described by 20/20 adhered to the principles and techniques described in these videos, the trauma they caused this family would never have happened.

But, think if the many persons who could have spoken up and said, “you are hiring someone with one hour of training to serve in a critical position of communication assistance, analogous to a translator, to conduct your forensic interview? What is the matter with you?” But no one did. All conspired together, including the unqualified facilitator who also agreed. But that was not the take away message by the narrator. The take away message was that FC is no miracle cure, but rather a dangerous technique that betrays individuals, families and entire communities.

FC was never “promoted” as a miracle cure. FC is a valuable communication technique that allows people who cannot use their voice, to be able to express their thoughts. That is all. When used properly, as any interpretation method, it is effective for communication. But when you hire unqualified people for a critical job, disaster is bound to ensue. And it did. But then, don’t blame the method, blame those who decided to employ an unqualified interpreter.

Can you imagine hiring a court interpreter who has had only one hour of training in that language? Or even one hour of training for courtroom interpretation? I am fluent in Spanish, and have translated both in small settings and at large public meetings by the County. But I have never been trained in the language of the court, or the complex legal concepts that are discussed in court. I would not be qualified to be a courtroom interpreter. And, if given one hour to prepare, I still would be far, far from qualified.

So who is to blame for this debacle? The law enforcement community who decided to hire then depend upon an unqualified and unprepared interpreter? The interpreter who agreed to do the work? The law enforcement community who failed to hire a second facilitator to validate the first interview? The law enforcement community who participated in the abusive interrogation of the brother, who is reportedly still feeling the traumatic sequelae of that experience? The law enforcement community who was unable to find any external corroborating evidence for the allegations yet arrested and jailed the father, removed the children from their family home and prohibited contact among the children and their parents? Really, FC is to blame?

No, 20/20. You put the emphasis on the wrong factor in this case. I recommend a do-over, where you look at the incompetence of the law enforcement community and make the proper recommendations. Only hire qualified personnel for this critical work. Train your staff. Revise your policies and practices to reflect standards of practice. Admit your wrongdoing. The prosecutor says he is blameless. I do not agree. Do you?