The Stanford Intellectual and Developmental Disabilities Law and Policy Project released a report focused on the Capacity to Consent to Sexual Activity among Those with Developmental Disabilities (link takes you to the page where you can freely download the report). The report provides historical background, the current state of the field, and capacity definitions. There are no federal statutes defining sexual assault and consent – each state has its own statutes. The report highlights six standards for consent used in various states: morality, nature and the consequences, totality of the circumstances, nature of the conduct, judgement, and evidence of disability. The Rape, Abuse & Incest National Network (RAINN) provides easy access to the laws in each state (link takes you to their state law finder). As wording in state statutes can be vague, judicial decisions help provide guidance for interpreting the statutes. The report from Stanford Intellectual and Developmental Disabilities Law and Policy Project provides summaries of judicial decision for each state. This report is an important tool for both victim rights and sexual autonomy advocates.
Chicago Children’s Advocacy Center is a program for sexual abuse prevention and response to crisis. They have supports specifically for children with disabilities. They recommend creating a family safety plan, teaching children about sex and sexuality, learning about sexual development, taking to caregivers/program staff about issues of sexuality, and watching others’ behaviors.I like this resource because the focus in on prevention through increasing the viability of sexuality.
The culture that makes it inappropriate to talk about healthy sex and sexuality creates a hidden space where dangerous sexual behavior can take place. Whenever we’re talking about prevention, I think that it is important to highlight that children and often adults with developmental disabilities cannot prevent their own abuse. Adults and older children with more power and more control manipulate to create situations where they can abuse. Prevention looks like trying to eliminate those spaces and creating opportunities for reporting. This agency seems to focus on that method and minimize language that blames the victim.
Here is a webinar which aired live on December 9th, 2015 on Safety & Autism: Helping caregivers and providers talk about sexual abuse and prevention.
We came across a great resource from Safe Place concerning abuse, including sexual abuse, and children with a myriad of disabilities, including neurodevelopmental (ASD,ADHD, intellectual disability), physical and sensory (blindness, deafness), brain injury, and mental health disabilities. This guide poses many questions about communicating and interacting with children with disabilities who may suffer from abuse or neglect. It also offers many suggestions to caregivers, family members, and educators about how to understand specific disabilities in the context of abuse.
You can find the guide here.
Here are some resources about sexual violence, including crisis hotline information:
Sexual Violence and Disabilities Resources:
Sexual Abuse of Children with Autism: Factors that Increase Risk and Interfere with Recognition of Abuse: A free-to-access report on sexual abuse and children with ASD.
People with Intellectual Disabilities and Sexual Violence: A brief report on signs of sexual violence involving people with intellectual disability.
Guardianship, Sexual Assault, and Rape Kit Rights: A previous post of ours which highlights policy changes involving issues with guardians, sexual assault, and the right to release a rape kit.
Promoting Justice: An Essential Resource Guide for Responding to Abuse Against Children with Disabilities: This guide discusses abuse and neglect toward children with many types of disabilities, including neurodevelopmental, physical, sensory, brain injury, and mental health disabilities.
General Sexual Violence Resources:
Rape, Abuse, and Incest National Network: General resource about rape, abuse, and incest. There’s a lot of information, but not all of it is specific to people with intellectual disability.
The National Child Traumatic Stress Network: Parenting resources on sexual abuse in English and Spanish.
The National Domestic Violence Hotline: A great resource on domestic violence and abuse issues, along with contact information for hotlines and other related services.
You Are in Charge of Your Body: A video series aimed at young children to identify and understand sexual abuse and how to communicate these incidents to adults. It also teaches children to take charge of their bodies.
Sexual violence comes in many forms and it can be difficult to distinguish them. Here’s a basic guide on how to classify types of sexual violence.
Sexual Harassment: Giving someone unwanted sexual attention. This can include touching someone’s body without their explicit permission, asking for sexual acts, and catcalling, which is an unwelcome, sexually charged comment.
Rape: Forced vaginal, anal, or oral sexual intercourse. Rape lacks clear consent. Rape can occur by strangers or people you know, even a partner. Sometimes, power is used to coerce a person into sexual intercourse. In these case, usually a person declines sexual advances and is then guilted into intercourse.
Statutory Rape: Sexual intercourse with a person who is a minor or not at the age of consent (which varies by state and country). Get more information on statutory rape and the age of consent here.
Incest: Sexual acts between people who are related. This can be siblings, parent-child, uncles/aunts and nephews/nieces.
Domestic Violence: Violence between two people in an intimate partnership. This includes threats and acts of violence (i.e. battery).
Stalking: When a person repeatedly follows, watches, or harasses someone for a long period of time. This can include excessive phone calls (i.e. five phone calls in one hours) and giving gifts.
So, how can we prevent sexual violence and protect ourselves and others against it?
Understanding sexual violence: By understanding the types of sexual violence, it can be easier to identify and understand how it can affect yourself and others.
Speak out if something doesn’t feel right: If you are feeling that you have been part of a sexual act that did not make you feel good or that you did not want to do, telling someone you trust or contacting a sexual assault survivor’s line can help clarify the situation.
Teach consent as a mandatory step in all sexual situations: Consent is a fancy way of saying “yes, I would like this to happen.” By giving consent, you are allowing another person to touch your body. You can tell them what you are and are not comfortable with (i.e. “I do not want to do vaginal sex, only oral”). Understanding that consent can change at anytime during the interaction is also important and can be overlooked. It’s okay to say “stop, I don’t want to have sex anymore.”
Here’s a quick video about consent, including examples of what consent looks like.
The focus of week 6 was to better understand power relationships. During this week, the participants worked together on a activity that helped them to learn about power and control in relationships and specifically the benefits of having more power, benefits of having less power, drawbacks to having more power, and the drawbacks to having less power. The main concept that we were teaching with this activity is that there should be a balance when it comes to power. We first brainstormed ideas on what it meant to have power in a relationship. After that, the participants discussed how different situations could be red flags that a relationship is not safe and we had them place those on the outside of the circle. We superimposed a circle onto our original brainstorming to reinforce this concept (using the powerpoint project and a dry erase board).
At the end of group we played a “Would you Rather” game to help them tune into how much power and control they prefer to have in relationships. Students are asked about different relationships where there is a power difference (eg. parent-child). If they would prefer the more powerful option they take a step forward, the less and they stand still. In my experience, individuals with disabilities are much more likely to choose a majority of less powerful positions in relationships. Food for thought.
For more information and activities on this topic see Adult Human Sexuality Week 5- Power Relationships
This Week’s Materials
Teaching and learning about privacy can be difficult and confusing. This activity uses a continuum of privacy (using private, semi-private, and public) to help differentiate privacy levels. There are two topics: body parts and places. You can use this activity to explain different privacy levels and explain contextual differences (i.e. a stomach can be a public body part at the beach, but a private body part at school) . Download the privacy activity places and body parts here!
I wanted to put you in touch with a website called “Living Well with Autism“. They have several Board Maker Social Stories related to privacy.
While I think overall this site has some nice ideas, I’d be careful about using “Good Touch Bad Touch”. Good/Bad may bring up feelings of guilt, could be over generalized, and might be confusing as an assault often starts with touches that feel good then moves to touches that feel bad. Also, there are some studies that have shown that children understand the word touch differently than adults. For example they wouldn’t categorize people kissing as touching, because well, they’re kissing. I think this could be a problem for someone with an intellectual disability that doesn’t categorize well. I like the terms safe and unsafe touch. I also like saying touching makes you feel something. If a touch feels good, it’s probably safe. If a touch doesn’t feel good it’s probably not safe. Then you can teach specific kinds of touches. Having said that, the site gives you some good Social Stories to start with. Pictured left is part of one of their stories.
Just another note on language. There is a movement among abuse prevention advocates to alter some our terminology when talking about sexual abuse prevention. I mention in my workshop that we have to be careful when talking about using education to help prevent sexual abuse because it implies that the individual is responsible for reducing his or her own risk. Alternative terminology includes personal safety skills, abuse-response skills, or self-protection skills.
It can be a little overwhelming to start thinking about communicating pictorially about human sexuality topics, but there are some supports available.
Many of you already use Board Maker (computer software that helps make visual supports and PECS). They have a “Communicating About Sexuality” add on that is very useful and only costs $15.00 (but you have to already have Board Maker).
If you would like some guidelines on how to approach augmentative and alternative communication (AAC) in regards to sexuality Speak Up has resources that you may find useful. Speak Up is a group dedicated to preventing sexual abuse/victimization among people who use alternative communication. They have guidelines, suggestions for communication displays, and information about building sexual vocabulary. This group surveyed individuals who use AAC and found that ACC users say they need:
- People who recognize that they are sexual
- Information about sexuality
- Vocabulary to communicate about sexuality
- People to communicate with about sexuality
- Accessible resources and services
Sounds pretty darn reasonable to me.
Shirley Paceley is based out of Blue Tower Training in Decatur, Illinois. She has been working with individuals with developmental disabilities for over 30 years and has specific expertise in abuse prevention and intervention. She is available to do trainings and consultations.
Check out this online store for books and resources developed by Shirley and others for teaching about sexuality and sexual abuse prevention.
Living Safer Sexual Lives is a training pack available for purchase ($57.23) for those of you who may be doing training on human sexuality and disabilities. I have not personally used their materials, but it was developed in a very interesting way and it’s not very expensive so I thought I’d pass it along. A research group in Australia interviewed several people with intellectual disability about their sexual lives and then used their stories to develop this training. The training is targeted toward parents, professionals, and self advocates. The training pack has three parts: introduction, training, and resources (including a DVD of people with intellectual disability telling their stories).
You can read the full report which outlines the findings from the interviews and how they used the interviews to shape the training. The report also includes accounts from people with disabilities about their sexuality.
The key themes that emerged from the stories were:
- Diversity and similarity. Diversity within the lives of the story-tellers and similarities between needs and desires of this group and other adults.
- The issues of rights and sexuality.
- The hidden nature of people’s sexual lives.
- Celebration of sexuality and relationships.
- Gender issues.
- Loneliness and rejection.
Thank you to Kelli at the Developmental Services Center for sending out this information! Over the past three years, three laws have been passed that improve public policy with the goal of increasing access to services for women with disabilities who experience sexual violence:
P.A. 96-318, eff. Jan. 1, 2010- Consent of a guardian, health care surrogate or health care power of attorney is not required in order for a victim with a disability to receive health care or release forensic evidence following a sexual assault.
If a victim with a disability is unable to consent to the release of evidence, and the victim’s guardian, health care surrogate or health care power of attorney is unavailable or unwilling to release the information, an investigating law enforcement officer may release the evidence.
P.A. 96-1010, eff. Jan 1, 2011- An adult with a guardian can:
- decide whether his or her guardian can look at her/his rape crisis center records; and
- decide whether or not to waive the rape crisis center privilege.
P.A. 97-165, eff. Jan. 1, 2012- An adult with a guardian can attend up to five, forty-five minute counseling sessions without the consent of, or notice to, the guardian unless the counselor or therapist believes such disclosure is necessary.
Click the link below to download fact sheets created for advocates and self-advocates
These fact sheets are a product of the Illinois Imagines Project, a collaborative among the Illinois Department of Human Services, the Illinois Coalition Against Sexual Assault, and self-advocates for people with disabilities.
Thank you to these groups who not only created these facts sheets but also advocated for these protections!
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!
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!