It was Middle School Day at Medieval Times in Lyndhurst, NJ and I was the chaperone for my son’s “self-contained” autism class. Christopher’s entire school went to the show – including the two autism classes. During intermission, I was asked if I could take the eight teenage boys, all on the autism spectrum, into the restroom, as I was the only male adult on the trip. In the restroom, there were eight urinals and seven of the boys lined up and lowered their pants and underwear down to the knees or below to use the urinals. There I was with my son and his classmates – seven hairy tushes in a row for the world to see, or at least all the other students and teachers who entered the bathroom after us. There was laughter, questions, and people just stopping in their tracks not sure what was going on. Then there was me trying to get the boys to pull up their pants and wishing they didn’t have free refills on their soft drinks. I share this story at many of my lectures and it always gets a laugh. Let’s face it – this is a funny story but after the laughter, so many parents share their stories of their own sons engaging in the same behaviors in school and public restrooms with horrible and sometimes tragic results.
The fact is there is a very specific culture and etiquette in the typical men’s room and we need to teach proper bathroom behavior/rules for our boys. If we don’t, they can become vulnerable to anything from teasing or bullying to victimization. Knowing how far down to pull one’s pants is only the beginning. Our boys need to know which urinal to use if there is more than one person in the restroom. Most of our children are taught to line up. This doesn’t work in the men’s room. Here’s what I mean – Imagine a woman sitting alone in a 500 seat movie theater with every other seat empty and right before the movie starts, in walks an unknown man and out of the available 499 empty seats the man sits directly next to the woman. Creepy, right? This is tantamount to how a typical male would feel if another man entered the restroom and walked by all the empty urinals to stand at the one directly next him. Individuals with Autism Spectrum Disorder (ASD) don’t understand the “creep factor.” So you see, there exists a hidden curriculum that every non-autistic person just seems to know, but those rules need to be taught to our children on the spectrum.
The sexual abuse rate of individuals with ASD by predators is between 40-70% (Sobsey & Richard, 1994). 49% of people with developmental disabilities who are victims of sexual assault will experience 10 or more abusive incidents (Valenti-Heim, D. & Schwartz, L., 1995). Among adults who are developmentally disabled, as many as 83% of females and 32% of males are victims of sexual assault (Johnson, I. & Sigler R., 2000). These statistics are shocking but true and for many reasons. Individuals on the spectrum are perfect victims. Again, they don’t understand the “creep factor.” They tend to be rule-governed. We need to be very clear about what rules we are teaching, especially where compliance is concerned. Many individuals with ASD don’t understand the consequences of their actions and can be very literal. Unless they have been taught specific rules, many of those with ASD would comply with inappropriate requests. For example, “Hey it’s hot in here let’s take our shirts off.”
Parents and teachers are the primary source of information and skill acquisition. Many parents, myself included, can’t or don’t want to see our children as sexual beings so we always say, “Not my child.” Parents of the more severely impacted and nonverbal children often feel that someone they know and trust is always with their child, keeping them safe; the bad things must be happening to more independent children who can be on their own. The parents of the more independent and verbal children may think their child tells them everything; it must be those nonverbal children that all the bad things are happening to. Let me be clear, these skills need to be taught to children and adults across the entire spectrum. We as parents and educators need to realize this and give our kids the skills they need to be safe and toilet training (including the hidden curriculum) is at the top of the list.
Here is the good news: we can teach our kids anything; we have over 70 years of science on how to teach them. There are some really good curricula for teaching sex education to individuals with autism and it’s very important that time is carved out during the school day to teach these life and safety skills. It’s never too early to start, but in reality, most individuals don’t get this information until after an incident has occurred – until after a student has engaged in inappropriate behavior such as touching themselves or someone else or breaking the rules, law, or other parts of the hidden curriculum.
As a certified law enforcement instructor, I have trained over 26,000 first responders in autism recognition and response. When I first started, I was training police, then firefighters and EMS personnel. More recently, I find myself training prison guards. I didn’t go looking for this work, prisons and juvenile detention centers have reached out to POAC as individuals with ASD are now entering the prison system for some of the reasons mentioned above. Prison is not a good place for anyone, but especially not for our population. The first time I received a call from a juvenile detention center with a request for training was a bad day. I asked how it was possible that children with autism could be in detention. The reply was simple; once the sexual line has been crossed, it’s hard to stop the process. Nationally, The Arc is spearheading an initiative, Pathways to Justice (www.thearc.org/NCCJD), to help advocate for developmentally disabled individuals who have entered the criminal justice system. This is extremely important, but it’s more important to give students with ASD the education and skills needed to avoid these situations.
So where and how do we begin? We start the sex education process in preschool (yes, preschool) with simple discriminations such as the difference between boy and girl and “yes” and “no.” We teach young children how to say “no” and we reinforce their use of the word. Eventually we teach that the parts of their bodies that are covered by their bathing suits are not to be touched by others. Again, these skills are so important that time must be dedicated to teaching them with sound teaching techniques and they must be taught to mastery.
As children get older, we must get our boys out of sweat pants. Sweat pants can be very helpful in the toilet training process, but once this is achieved, boys need to wear pants with belts like their typically developing peers. Social acceptance is an important reason to do this but more importantly, sweat pants give easy access not only to the individual wearing them, but to would-be predators as well. They also allow for sensory input that is not appropriate in public situations.
Eventually, we must teach our kids about inappropriate touching – how to avoid being touched and how not to touch others. Here’s what parents and educators must ask themselves every day: “Is this behavior that may be cute at five years old still going to be cute, or socially acceptable, or legal at 15 years old, at 25 years old?” If the answer is no, we must put a stop to it at five. Common examples are hugging, kissing, touching or smelling others. Here is another great piece of advice: Do not tolerate behavior from your child or student with ASD that you wouldn’t tolerate from a typically developing child. We must continue to teach our children the difference between trusted individuals and strangers, and how to recognize danger in the real world and on the internet.
It’s not easy to think about and it can even be embarrassing, but we have to start somewhere and practice makes perfect. Let me leave you with an image. I was on my way to give a lecture on Sexuality and Keeping Children Safe to a group of 135 school nurses. I was nervous because I knew my strict upbringing would make it difficult to use even the most clinical language in front of a woman, let alone a roomful of them. So I figured I would practice saying the words over and over, experimenting with tone and inflection… in the car… out loud… with the windows open. There was a car next to me at a red light with a woman staring at me in horror and disgust. All I could think to say as she pulled away was, “It’s ok! I’m a teacher!” Needless to say I have since put on my “big boy pants” (above my knees) and left my embarrassment at the door.
Every year I train hundreds of police and prosecutors on autism recognition and response. We give school assemblies to thousands of students every year on how to be a friend to someone with autism. We are doing our best to make the communities around our children and adults with autism safer and more welcoming places, but that’s not enough. POAC offers free training to parents and educators on all of these safety and sexuality issues. We must give the individuals with ASD themselves the knowledge, skills, and power to recognize and avoid danger and keep themselves safe.
For more information about POAC, please visit www.poac.net.
Johnson, I., Sigler R. (2000). “Forced Sexual Intercourse Among Intimates,” Journal of Interpersonal Violence. 15 (1).
Sobsey, Richard. (1994). Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Paul H Brookes Publishing. Baltimore, MD, US
Valenti-Heim, D., Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California.