Here is an example of a five point scale that was developed by April Keaton, LCSW, to explain the different levels of relationships. The pyramid shape was used to convey that you might have a lot of “friendly acquaintances” but much fewer “long term relationships”. It was important for this person to connect the level of the relationship with the level of intimacy so you see examples of intimate behaviors at each level of the pyramid. There’s also an element of time built into the descriptions. You wouldn’t have to start with pyramid filled out. You could start with a blank pyramid and support an individual with filling in the levels. You could add names of individuals at each level. You can download the pdf of this image by clicking here.
No, these aren’t the circles we usually talk about related to levels of intimacy and based on the Circles curriculum. These circles developed by Dr. Dennis Dailey, focus on Sensuality, Sexualization, Intimacy, Sexual Identity, and Sexual Health. I think these might make a good framework for a 5 module course or could be used to introduce the concept of sexuality. Click here for a full explanation of The Circles of Sexuality.
It is difficult to determine the exact risk of sexual abuse for individuals with ASD (it’s hard to get a good report of sexual abuse among the general population). The first national survey reports victimization rates of 27% for women and 16% of men among the general population (Finkelhor et al., 1990). A study has shown that children with disabilities are 1.7 times more likely to experience sexual abuse however all children with disabilities were examined, not just individuals with ASD (Crosse, Kaye & Ratnofsky, 1993). Individuals who are caregiver dependent may be at the highest risk because family members, family acquaintances, and paid caregivers are the most likely to commit sexual abuse (Mansell et al., 1996). Difficulties communicating, lack of knowledge of sexual norms and activities, and isolation may contribute to increased risk of sexual abuse among individuals with ASD. Sexuality education may provide opportunities to for individuals to be better able to communicate and better understand social norms and activities. Furthermore if the support systems of individuals with ASD are in openly talking about sexuality it may create a climate where this abuse is less likely to happen. The Department of Human Services in Illinois has started a project to end sexual violence against women with disabilities. I’ve gotten to meet several people working on the project and they are very knowledgeable and dedicated. I hope they succeed!
Here is an activity you may want to try out for teaching about joking in context. Joking is really difficult because it’s very nuanced. It can be a great way to connect with people but also hurtful. I also think it is difficult because of the educational context- jokes that aren’t appropriate at school, work, etc. It might be okay in some places but it feels weird saying- “yeah, it’s okay to tell fart jokes with your friends.” It really easy to cross over from actual social skills to formal social skills.
Although this list can be used with any population, it is geared towards individuals who need a considerable amount of support. Many of these are probably things you already do!
1. Prompt clients/consumers/students to greet one another.
I’m always surprised to realize that some people don’t know the names of the other people they spend time with each day. A simple greeting is a wonderful, simple, social script that you have natural opportunities to practice each day.
2. Ask permission or notify an individual before touching their person or their wheel chair.
This reinforces that an individual has control and autonomy over his or her own body. It’s important for people to feel in control of their body so that they feel safe and also so they can keep others’ safe. It also communicates that a person’s body is something that needs to be treated with respect.
3. Keep all aspects of a personal care (toileting) routine private.
This means that you don’t follow behind someone with a Depends (or other personal care item)- use a bag. It also means you don’t announce taking someone to the restroom to the group (say it quietly so only the person you are speaking to can hear).
4. Do not speak negatively about clients/consumers/students in front of others – including saying they are having behaviors.
People are very perceptive about when others are speaking negatively about them. When you say so and so is having behaviors it makes the situation very public, embarrasses the individual, and gives positive reinforcement (in the form of attention) to the behavior. If for your safety you need to communicate this, use a code (In Champaign we would say “did you see the Illini’s defense last night?” which meant we are having a potentially dangerous behavior situation please hang out until all clear).
5. Do not affectionately kiss, cuddle, or pat on the head clients/consumers/students.
In someways this is a no brainer and in other ways it is hard. I know so many people who are touch deprived and it seems harmless to give someone a hug when you see them but these types of affection have several negative side effects. 1) They send an inappropriate message of how to interact in non-sheltered situations (you can’t hug people you meet on the bus). 2) They communicate that the individual is child-like and a-sexual. 3) They can create a climate where it is difficult to detect sexual predators.
6. Make home movies.
A flip camera is less than $200 and very easy to use. Make videos showing people being friendly to one another, answering questions about what is important to them, and daily routines or special events. People love watching themselves and their friends. It allows them to tell a story that they may not be able to tell by themselves.
7. While maintaining appropriate boundaries, talk about emotions (including your own).
All people have complex feelings regardless of their abilities in other areas, but people don’t always have the words to communicate them. It is appropriate to model emotional expression. For example, when I go with a group from our day program to deliver food to families, I tell a story about how I feel. I say, “It makes me a little sad to know that people don’t have any food, but the family was so happy we brought them food. It makes me feel happy and proud to help someone else. I like to do it.” I just talk about it as we’re driving back. It’s also appropriate to name clients’/students’/consumers’ emotions, “You seem like you might be a little bored” or “You look so proud to have gotten your pay check.” What you are doing with these easy statements is creating an emotionally safe environment. (Note: this is way different than unloading personal problems on clients/students/consumers).
8. When referring to intimate body parts, use the correct word.
9. During lunch/snack/work breaks prompt folks to talk to one another, even if it the same conversation you had yesterday, and preferably incorporate pictures.
Perhaps combine with number 10 🙂
10. Have a regular discussions about current events.
One of my favorite stories came out of a current event discussion. It was during the 2008 primaries and I said that Hillary Clinton was running. The person I was talking to said, “Hillary sounds like a girls name” and I said, “It is.” He started laughing hysterically, and said, “Sarah don’t tease me, a woman can’t run for president.” What a great way to start talking about gender!
You might have seen this visual aid at the workshop. Often folks don’t understand why something as simple as looking at someone else may get them into trouble. This visual support explains how the other person might feel as well as what they can do in various situations. Click on the link if you would like to view this image as a pdf (feel free to copy and use it for educational purposes).