Including people with disabilities in our communities poses significant challenges. While inclusion helps increase normalization, it also increases vulnerability to community risks and hazards. How do we prepare children and adolescents to access their communities, without running the risk of their being exploited? What if they show affection in inappropriate ways, use sexual language that may be misconstrued, or touch body parts that could bring legal action, or at the very least a disgruntled public?

If we simply advocate for opportunities to be included and leave it at that, we are not fulfilling our obligation to those who do not automatically develop, or naturally demonstrate, pro-social behavior. We teach academic skills in a systematic fashion, skill-streaming the ones we feel are most salient for each level of functioning. Why then do we assume matters of pro-social behavior will develop without direct instruction?

People with Fragile X syndrome experience a unique social dilemma because on the one hand, they express a desire to be social, but when given the social opportunity, they can become so hyperaroused that they retreat and prefer to watch from a distance. This approach-avoidance behavior can become a deterrent to acceptance and experiences of social reciprocity. I have discussed this phenomenon in a prior column with respect to the role that anxiety plays in social integration. This article, however, is focused on teaching more pro-social behaviors, absent anxiety.

Social and Sexual Relationships

In 1981, two very brave female professors at Portland State University began to discuss and write about how people with disabilities need pro-social and sex education training. At that time many people believed that persons with disabilities belonged in institutions and that to even fathom social or sexual relationships among those with mental or physical challenges was perverted and taboo. I was fortunate enough to have known those women, and I benefited from their mentoring. Many years later, we can truly say, “We’ve come a long way, baby,” but we have further to go.

Strategies to reduce the anxiety provoked in social venues are certainly important in our quest to foster more natural, social interaction. There are, however, other important skills to becoming more accepted in a very discerning social society. Teaching children at an early age how to discriminate between public and private provides a rule-based strategy that can use visual supports. This process begins early so that the child comes to understand the concept of public and private places, people and behaviors. It also can lay the groundwork for responding to more abstract social dilemmas that present throughout the life span.

For example, a very young child may be allowed to remove his pajamas and underwear in preparation to dress for the day while watching his favorite cartoon in the family room. As the child grows older, this standard becomes less appropriate, yet the behavior may have become so embedded in his daily routine and schedule that it becomes difficult to change. It is also hard for the child, as he gets older, to understand why the behavior is now inappropriate and no longer tolerated.

Another example is when as an adolescent, a boy chooses to unzip his pants to tuck in his shirt. That behavior is considered private, allowed only in a private setting such as the bedroom or bathroom. If that lesson is not learned early and the behavior takes place in public, it might be construed as a sexual act or as pre-perpetration behavior.

Training to distinguish clearly between public and private can also be critical to a child’s avoiding exploitation. Knowing that touching and hugging is a private behavior that should only be demonstrated with private people, such as family members and not strangers, may provide a safety net and subsequent protection. Learning a concrete, rule-based structure eliminates any guessing or evaluative process in situations that might result in an exploitive relationship.

Teaching pro-social behavior works best using real life photographs and video vignettes that demonstrate appropriate social interactions using the private and public context. The structure of this type of program provides reinforcement so that when similar real-life situations are encountered, the learned skills can be applied and the behavior corrected in a safe and caring environment.

Teaching to discriminate between private and public behaviors and then matching those behaviors to public and private places and people provides a simple, concrete method to shape safe behavior. It also allows for immediate redirection from a parent, caregiver, or school staff when unsafe behavior occurs. If, for example, when the person with Fragile X syndrome engages in behavior that should be demonstrated only in a private place, the parent can say, “Stop, that’s private,” and redirect them to a private place like a bathroom or bedroom.

Public and Private Behaviors

Public behaviors might include blowing your nose, holding hands, talking on the telephone, dancing, shaking hands, high-fives, hugging, being hugged, pats on the back, kissing on the cheek, eating, riding public transit, smiling at another person, or giving compliments.

Private behaviors may include wearing pajamas, urinating, having a bowel movement, masturbating, dressing, undressing, changing underwear, changing your Depends, flatulating, kissing, taking a bath or shower, intimately touching others (private areas), cursing, zipping and unzipping pants, changing tampon or sanitary napkin, closing bedroom door, standing very close to someone, keeping a secret, putting on deodorant, giving out address or phone number, insulting others, writing in a diary, or brushing teeth.

Public and Private Locations

Examples of public locations includes public restrooms (school, church, restaurant), theaters, restaurants, libraries, living rooms, common rooms, stores, shopping malls, buses, public transportation, classrooms, playgrounds, automobiles, trains, airplanes, church, synagogue, an amusement park, or museums.

Good examples of private locations are bathrooms at home, bedrooms, hotel rooms, airplane bathrooms, any room with the door closed or a “Do Not Disturb” sign, or a doctor’s office and examining room.

Private and Public People

People that should be considered public individuals are a postal carrier, delivery person, bus driver, waitperson, plumber, teacher*, spiritual leader*, acquaintance, policeman, or fireman.

People who can be considered part of the person’s private world are mom, dad, sibling, grandparents, a girlfriend or boyfriend, spouse, close friend, or medical providers such as doctor, dentist, or therapist.*

*Depending on context, these can switch from public to private, or vice versa.

Modeling Behavior

Providing good modeling and consistent intervention to distinguish public from private spheres must begin at an early age. Engaging the child in a structured program to teach these issues at a young age will pay off as a child matures, when acceptance is often determined by pro-social behavior.

People with Fragile X syndrome have so much to offer. It would be a grave disservice to our society to limit their free access to communities due to inappropriate social behaviors. Yes, we’ve come a long way baby, but the best is yet to come!

Dr. Marcia Braden

Marcia Braden, PhD, PC
Dr. Braden is a licensed psychologist with a clinical practice specializing in children and adolescents, and serves on the NFXF Scientific and Clinical Advisory Committee and the HillSprings Learning Center Advisory Committee. She is also a contributing author of Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman, Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber, and author of Fragile: Handle With Care: More About Fragile X Syndrome.