The ASA's 38th National Conference on Autism Spectrum Disorders (July 11-14, 2007) of ASAThe Westin Kierland Resort & Spa, Scottsdale, AZ
|For a complete author index with session numbers, please click here|
|Saturday, July 14, 2007: 8:15 AM-9:30 AM|
|Cushing A & B|
|#2568- The Hidden Curriculum of Sex: Healthy Sexuality on the Spectrum*|
|Healthy sexual attitudes and habits pave the way for healthy relationships. Individuals with ASD struggle due to inability to pick up social cues, which can have dire consequences when it comes to issues related to dating and sex. This presentation takes a proactive practical approach by teaching the Hidden Curriculum of Sex in order to both protect the autism population, and provide them with proper guidance so they may fully and rightfully develop into healthy fulfilled human beings. |
|Presenters:|| - Kristi Sakai is the mother of three children on the spectrum and author of ASA Literary Work of the Year 2006 in the Family/Social Category, Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family. She is the editor of AAPC Community of Support, and a national presenter. But her greatest passion is being "Mom" to Tom, Kito and Kaede, and wife to Nobuo, all of whom have Asperger Syndrome. Kristi is currently co-writing (with Peter Gerhardt) The Hidden Curriculum of Sex.
- Dr. Peter Gerhardt, Chairman of the Scientific Council and President of the Organization for Autism Research. Dr. Gerhardt serves on several advisory boards including The Autism Society of America, MAAP Services, NJ Cosac and ASPEN. He is an international presenter on the topic of, and has an extensive professional background in, transitions to adulthood and related issues for individuals on the spectrum. Dr. Gerhardt received his doctorate from Rutgers University Graduate School of Education. he is currently co-writing (with Kristi Sakai)The Hidden Curriculum of Sex
Why teach the Hidden Curriculum of Sex?
Because what they don't know will hurt them
Although awareness regarding sexual assault and abuse has increased in this country, it continues to be a significant issue. According to the Department of Health and Human Services, teens aged 16-19 are 3 1/2 time more likely to be victims of rape, attempted rape and sexual assault. By the age of eighteen 1 in 4 young women in the general population will be sexually assaulted, 1 in 6 young men. These statistics alone are frightening for parents and the community charged with protecting our youth, however, the figures are even more grim for our population in the autism community. A study by Valenti, Hein and Schwartz states that 90% of adults with developmental disabilities will be sexually abused or assaulted over the course of their lifetime. 49% of these individuals will suffer 10 or more incidences. Furthermore, the damage caused by sexual abuse, sexual assault and rape are pervasive and long-lasting. Women who have been victimized are more likely to be promiscuous, enter abusive relationships and experience domestic violence or be re-victimized through further sexual abuse and assaults. Men who have been abused are also more likely to be exploited and abused repeatedly, and sadly several studies confirm they are unfortunately also more likely to act out violently or inappropriately and may become sexual predators themselves. What are we do to in light of these overwhelmingly painful statistics? We must take a proactive approach to teaching both socially appropriate behavior and convey healthy positive messages about sexuality to our adolescents and young adults on the spectrum.
Why is our population at higher risk?
Those of us who work in the autism field develop a kind of sixth sense and can easily spot a child or adult on the spectrum, irregardless of their functional level. We recognize the characteristics of ASD, things such as mask-like facial expression, unusual gait, inability to read social cues and so on. What may appear to others to be odd or puzzling behavior, we see as simply the behavior of person on the spectrum. We recognize the underlying characteristics and respond with compassion and understanding. Now imagine the ability to easily spot these individuals, but with the eye of a predator. The very characteristics of ASD impact the individual's ability to read facial expression, body language or social cues that might signal danger. Many are perpetual loners with few resources and lack the protective peer factor (peers who will teach them correct social behavior.) Our individuals on the spectrum are literally like the limping weak antelope that straggles behind the herd, and easily snapped up by the hungry cheetah. The predator spots and preys upon them and they are too frequently helpless to protect themselves from either outright attacks or (more common) manipulative exploitation. Studies show that one of the causes of repeated sexual exploitation and abuse is the “freeze response.” We are wired by nature with a fight or flight response, but unable to do either, we become inhibited and “freeze” as a protective mechanism. “Playing possum” is intended as a deterrent to predators in the wild, but in the human world it simply serves to facilitate abuse. Once an individual has been abused it becomes hardwired into the brain to freeze when faced with danger, the victim is literally unable to protect himself from future sexual overtures or assaults and becomes re-victimized again and again. Sexual predators are well-aware of this and use it to their advantage.
In addition, our population is further hobbled by our own well-intentioned overprotection. Out of fear of our children being harmed or exploited we may limit outside exposure to real life situations that will allow them to master skills and become independent. It is a common mistake new parents of a small child make: we believe that we can protect them from every fall if we only watch them. Instead what frequently happens is that if we don't allow them to have small tumbles and falls and learn how to avoid them, the one moment we look away, they will learn the hard way—down a flight of stairs and suffer much more serious consequences. It is unrealistic to believe we can watch them every second or that we can protect our child from every hurt. Eventually most parents learn this, but parents and care providers of children with neurological disabilities may not revise their style of teaching risk. We want to shield them from all hurts, but instead we fail them more by not providing the skills necessary to help protect THEMSELVES from harm. This includes small, but significant, skills such as going into public restrooms ad knowing how to behave appropriately in that environment. To larger skills such as what is appropriate when it comes to issues such as masturbation, dating and sexual relationships. It is not avoidance of these topics and situations that protects our youth, but equipping them with the skills for self-management and awareness of what is socially appropriate through teaching The Hidden Curriculum.
Out of embarrassment parents may not address issues related to sexuality, or perhaps it is the fear that bringing it up will cause the adolescent to be more sexual. For example, although the Victorian days of believing masturbation is harmful are past, the vestiges of taboo remain and it makes most of us extremely uncomfortable to discuss it. Parents would prefer not to think of their children as sexual beings and may believe that bringing it up will cause them to begin engaging in behaviors they previously hadn't. Fear of it becoming an obsessive behavior out of balance with studies and social situations is a real concern. However, avoiding discussing it is not a deterrent. Rest assured, our adolescents will hear about or learn these things on their own, but how accurate is the information they are receiving from the kid on the bus? And how well managed will these behaviors be if the child is left to his or her own devices? The reality is that 67% to 97% of individuals on the spectrum masturbate and it is the most common INAPPROPRIATE sexual behavior (namely public masturbation). There are strict social guidelines regarding who to be sexual with, when and where. Failure to address this can lead to socially inappropriate behavior such as public masturbation, being sexually victimized or even being charged with sexual misconduct or assault simply because no one was willing to step in and address these issues directly until there was a serious breach of conduct.
So what do we do?
Parents and professionals need to come together to address sexual issues in our ASD population. First and foremost we must acknowledge and accept that like all human beings, individuals with Autism Spectrum Disorder have a right to experience healthy sexual relationships and to meet their sexual needs alone or with a partner. Organizations and school must develop policy for dealing with sexual issues, and programs for addressing the need to teach related social skills. As much as possible this must include parent and guardians, and an individualized plan should be created to address the specific need for education and intervention for each client. No program is effective in isolation, it is important to have a plan to address the actual need and social skills needed to be mastered when in the community.
The program should include rules about sexual behavior such as when, where and with whom specific behaviors are appropriate. It needs to include instruction with specific language used and what it means and clear guidelines of what constitutes “appropriate”, “inappropriate”, “private” and “public” behavior. These strategies can be used for any number of social situations and are not limited to those related to sexuality. A related assignment is a checklist: Who is it? Is it okay to touch? Where? Pictures can also be used and an X is placed over the inappropriate behavior. Example: Picture of nurse taking blood pressure, doctor looking in throat, a picture of the patient hugging the nurse, a picture of high-fiving the doctor. An X would be placed over hugging the nurse.
Clear definitions of what constitutes dating, sex, relationships in our culture must be provided, along with clarifying expectations with a partner or date. For example, what is a date? The dictionary will only serve to give a confusing definition that means absolutely nothing in the real world. For some a date holds the assumption that sex will be involved, and yet the other party may not be thinking the same thing. Teaching the importance of establishing mutual expectations when dating is paramount. In addition instruction must teach the importance of both obtaining consent for intimate behavior with a partner. It is important to note that in some cases the individual may not have the legal right to give his/her own consent and this should be clearly understood to both the individual and potential partners.
Verbal instruction alone is not an effective teaching strategy for individuals with ASD. It can be supplemented with visual aides including video examples from television or movies demonstrating both appropriate and inappropriate behavior. Small group activities for practicing dating related social skills, or having other neurotypical peers or adults play act and demonstrate are both effective strategies for teaching the Hidden Curriculum.
The following are a few examples of “The Hidden Curriculum of Sex”:
If you like someone and they have given you their phone number is it okay to call them. If they do not call you back it is not okay to call them repeatedly.
If you mutually agree to get together with someone you are dating or friends. But if you follow someone, that is stalking.
If someone asks you to come back to their apartment at the end of the date it means they are asking you to have sex.
Oral sex is not “required” on a date in spite of what your date tells you.
If you have a sexual dream about someone, do not tell them. It will make them embarrassed and uncomfortable. Keep your “naked dreams” to yourself.
It is appropriate to discuss sex with someone you are dating (you should!) It is not okay to tell someone you are not dating that you want to have sex with him/her. This is called sexual harassment.