The Association of University Centers on Disabilities has created an incredible resource for self-advocates to gain sexual information and advice through a webinar series. The first episode of Sex Talk for Self-Advocates contains a panel of sexual educators answering questions about relationships and sexuality posed by self-advocates. Important questions such as “How do you know if someone is your boyfriend or girlfriend? What exactly does consent mean? How to be gay?” are discussed. The webinar series can be accessed through the AUCD website, linked below, or by going to AUCD network’s youtube channel. The presentation slides containing information from the video can also be found on the AUCD website. Sex Talk for Self Advocates is a great free resource that contains informed speakers and spreads sexual education to a diverse group of individuals.
I had the honor of presenting at the Champaign-Urbana Autism Conference where Temple Grandin was the key note speaker. So much of her message could be applied to human sexuality instruction.
- Don’t yell “no!” Calmly tell people what they should be doing. (Dr. Grandin was talking about putting her finger in her water cup at the dinner table, but the same rule applies to masturbation).
- Give lots and lots of examples of what falls within a category and it will eventually build up the concept you are working on. (Dr. Grandin was talking about understanding church steeples but the same strategy can be used to understand body parts).
- Once you have a concept down use that concept to expand. (Dr. Grandin was talking about airplanes, but the same principle applies to privacy – one you get private body parts down you can use the concept of privacy to understand places and ideas).
- And from Eustacia Cutler (Dr. Grandin’s mother), “The more we understand how autism [and sexuality] works the less anxious we become.” And sexuality added.
I focused on goals for sexuality instruction across the lifespan (exploring, understanding boundaries, coping with changes, and living your story) as well as modalities for instruction (socialization, formal lessons, behavior planning, and advocacy). You can find my presentation here.
Here at The Birds and The Bees, we love getting to work with other Champaign-Urbana community members. The Developmental Services Center in Champaign is a great resource for children and adults with developmental disabilities. We’ve done an interview with Kelli Martin, member of DSC’s Sexual Resource Committee, who teaches human sexuality to adults with developmental disabilities.
Would you provide a short bio of your experience as a human sexuality educator?
I have worked at Developmental Services Center for 14 years and part of my responsibilities here includes being a member of our Sexuality Resource Committee. I have been a member of this team for almost 5 years. At DSC I provide education to our adult individuals, typically on a 1:1 basis. Topics taught have included basic body part identification and function, information on STIs and prevention, public vs. private, how to ask someone out on a date, male/female roles, navigating online dating, and everything in between. Prior to working at DSC I worked as an occupational therapy assistant in a variety of settings. Sometimes aspects of my job would include educating a patient on sexuality/body image/relationships after a physical injury in particular with young adults who had experienced traumatic brain or spinal cord injuries.
What is the most common misconception about sexual education that you encounter?
That we only teach people about having sexual intercourse.
What is one of your favorite topics to teach and why?
One of my favorite topics to teach has been about power in relationships. The conversation or session might start out about some sort of intimate/dating relationship and how power works, looks, feels in that sense, but then the points learned can be used in so many other relationship types. Many people, especially if they have a developmental disability have never had any control over their own life or felt that it was ok to make choices. It is very empowering to teach and a wonderful thing to witness when it finally clicks with the participant.
What do you find most difficult about teaching human sexuality?
I find the most challenging thing is to make sure that I don’t impose any of my own beliefs or biases into the session. I want to present objective information and then let the person make up their own mind about how that applies to them.
Could you give an example of what your teaching looks like (eg. how you have adapted existing material, an activity you like to use, how you have explained a specific concept)?
My teaching looks different from one participant to the next depending on their needs, but I like to use a lot of visual materials and I prefer to work 1:1. Pictures work well, but I like finding movies or YouTube clips that can emphasize or give a real representation of the point we are discussing. This was particularly helpful one session when the participant and I were discussing sexual harassment. He needed to see an example outside of himself to really understand what he was doing to others without realizing he was doing it.
What do you think is the greatest issue facing individuals with intellectual and developmental disabilities regarding human sexuality?
I think the greatest issue continues to be that those without a disability still have the perception that people with intellectual and developmental disabilities are not able to understand, make decisions, or express themselves. The individuals are then limited by what the support people in their life think is best for them which rarely includes anything about sexuality, relationships, or asking them for their opinion about their own life.
In your teaching, how do you increase awareness about rape culture and sexual assault?
I am part of a statewide project called “Illinois Imagines”. Our local collaborative is made up of disability service providers, the rape crisis center and DHS. We work to improve services to women with disabilities who have been survivors of sexual violence. There is a tool kit which includes many activities and lesson plans for women with disabilities to learn more about speaking up for their right to say “No” against violence and also their right to say “Yes” to healthy relationships and expression of their own sexuality. Our local team has also put on a couple of workshops for disability and mental health service providers, emergency personnel, and hospital staff in how to assist someone with a disability who is in crisis from a sexual assault.
You can download some information on Kelli here.
I recently did a presentation at the Illinois Council on Family Relations (ILCFR). I thought I’d share that presentation with you. I hope you find it useful. It’s about the framework I’ve used to design this website. The framework is based on the one that was published in the Journal of Family Relations by Hughes, Bowers, Thomann Mitchell, Curtiss (me), and Ebata. Feel free to contact me if you would like more information on developing an online program. The link takes you to the presentation in an interactive format or you can view it as a pdf: Interactive or PDF.
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.
Teaching human sexuality is about formal lessons, selecting information, and choosing how to teach it, but it’s more than that. To be a sexuality educator you have to see the whole person and be committed to support that person. It’s not easy, it won’t be prefect, and you might make mistakes. But it’s not impossible either and you have lots of tools.
To me, it’s about asking “why not?”. Why not teach someone about different sexual positions? Why not incorporate questions about sexual life into annual planning meetings? Why not teach someone how to ask someone else on a date? Why not affirm someone when they are expressing their sexuality? Sometimes there are good answers to these questions but a lot of times there just aren’t. Being a sexuality educator is about being an advocate. It’s about giving people information in an engaging way they can digest. It’s about teaching skills and changing patterns of behavior. It’s about sending the message that there is nothing fundamentally wrong with who you are. I really appreciate people taking time to read this blog because I think the work you do is really important. Thank you!
There are many different ways to make visuals: cut and paste from magazines, jot down words and images, use Boardmaker, use power point…
For each method there are different pros and cons and a lot can be said for something that’s just plain easy to use. I also don’t think there’s anything wrong with a visual that has been made quickly- if it gets the message across, it doesn’t have to look nice.
But sometimes it is important for for a visual to be ascetically pleasing- and I wanted to share a free tool that’s available for making infographics (what marketers and advertisers call visual supports). It’s not particularly easy to use and it takes more time, but in the end you have a nice looking product. I would use this I wanted to make something I could use over and over (it’s worth the time) or if I was working with someone who thinks my regular visuals are “babyish”. You have to be careful about resisting the temptation to over clutter. There are several different generators, but for no cost, this one has the most flexibility and is relatively easy to use. http://www.easel.ly/
This visual goes along with the “What Should I do?” exercise we did during the workshop. You can download this visual as a PDF.
I know a lot of you already do a lot of lesson planning, but when you’re new, it can be a little difficult figuring out where to start. Here are step by step instructions for lesson planning as well as a lesson plan template. To see examples of some of my lesson plans click here, here, or here. You may not need to be so structured every time, but it helps in the beginning. It also good to have a series of documents that you revise so you’re not re-inventing the wheel every time.
What do I want to make sure that I have time to talk about? What are the most important issues for me to cover?
Step 2: Audience
Who is my audience? What adaptations will they need? How long is their attention span per activity? Will I need to adjust the room?
Step 3: Goals & Objectives
What are my objectives? What do I hope participants will learn? (More than two or three goals and objectives may be unreasonable)
Step 4: Lesson Plan
Write the outline for your presentation and allot estimated time to each segment. Consider potential activates: focus writing, videos, lectures, questionnaires, stem sentences, drawing/art, responding to pictures, matching, sequencing, pro/con lists, continuums, attitude assessments, ice breakers, guided imagery, journals, role plays, case studies, stories/media, brainstorming, creating teaching materials, building models, myth/fact sheets, self assessments, thought bubbles and small groups (this is not an exhaustive list). Whatever you choose (1) make sure there is some variation (2) build your activities from more structured to less structured, (3) warm up your participants for sensitive topics, (4) and allow for participation through multiple modalities. You will probably run out of time so schedule the least important things last or know exactly what time you have to cut earlier activities off. It’s good to either over plan or have a few tricks up your sleeve in case one of your activities bomb or you run out of time.
Step 5: Practice and Coordinate
Practice and, if working with a partner, delegate facilitation responsibilities. Is the time frame realistic? Do I understand each activity? What can I cut if necessary?
Step 6: Materials
Gather any materials you will need. This list would include handouts, visual aids, flip chart, materials you’ve developed, ect.
I had a blast in Carbondale (thank you all)! People really responded to the time we spent thinking about how to explain concepts like arousal and orgasm. In the anatomy lesson of the curriculum we’ve been did this summer, I have similar explanations for explaining the reproductive parts of the body. I’m going to include the entire list here, but if the entire list is too overwhelming for your students choose 3-5 physiological parts to focus on per gender. I would recommend reading over the full WEB MD definitions of these terms (click here for the worksheet Body Part Functions)- you may come up with better explanations!
Some general ideas I try to convey…
- Some people’s reproductive organs are mostly inside the body and some people’s are mostly outside the body.
- Reproductive organs are a system of tubes, canals, and storage centers that connect to one another.
- Reproductive organs produce genetic information and try to bring it together.
Vulva: A part of a person’s body that is used for reproduction, urination, and pleasure. The vulva is outside the body. Every vulva looks a little bit different, but they all have folds of skin, openings into the body, and a clitoris. During puberty, the folds of skin become covered in hair.
Labia majora: Skin that protects the vulva
Labia minora: Skin that protects the opening to the vagina
Clitoris: Skin and nerves that cause pleasure
Vagina (birth canal): The vagina is used for reproduction and pleasure. During reproduction, the job of the vagina is to connect the uterus to the outside world. When a baby is born, the vagina squeezes in a special way to help the baby out of the uterus. When being used for pleasure, the vagina can be touched to make the body feel good.
Uterus: Where a baby grows
Ovaries: Holds the eggs (which hold genetic information)
Fallopian Tubes: Connects the ovaries and the uterus
Penis: A part of a person’s body that is used for reproduction, urination, and pleasure. The penis is outside the body. Every penis is a little bit different but they all are shaped like tubes with a small hole at the end.
Scrotum: A tissue sack that holds the testes. During puberty it gets covered with hair.
Testicles (testes): Produces sperm (genetic information)
Epidermis: Where sperm mature
Vas deferens: Brings sperm to the urethra
Ejaculatory ducts: a connector.
Urethra: carries urine and semen out of the body
Seminal Vesicles & Prostate Gland: Produce sperm energy
Bulbourethral gland (Cowper’s glands): Produces lubricant (makes things slippery)
This may be more difficult than it appears at first. I like to communicate and teach broad and complex ideas about what sex is, but this can be really difficult for folks to grasp at first. I usually start out talking about reproduction because it’s a little more concrete and then move into sex more generally once reproductive intercourse, erection, ejaculation, and arousal have been covered. So lets start with those (and I’ll toss in a couple other concepts that may be difficult to explain). These are how I explain these concepts, but a curriculum you use may have other suggestions you find helpful. I used board maker pictures here, but real pictures would also be appropriate in many cases.
*You could substitute genitals, vulva, or penis for private area to be more concrete. Sometimes with middle school students I say “you know where” to be intentionally more vague- but only if I’m confident they do know where.
Sometimes I add, the blood fills up the spongy tissue of the penis, but other times I omit the blood part and just say the penis gets harder and bigger. This would depend on the level of complexity the individual can handle.
Ejaculation/Orgasm: “You have sexy feelings, your body feels really good, and you get so excited that you have an orgasm- a big burst of sensation*.” If they have a penis, I add “then fluid comes out of the penis.” If they have a vulva, I add “then some fluid may come out of the vagina”. If they ask what kind of fluid you could add, “a sticky milky fluid” and then if they have a penis, “with sperm in it.”
*If sensation is an inappropriate word you could replace it with feelings.
Reproductive Intercourse: “When a person put their penis in another person’s vagina and releases sperm, ejaculates. If the sperm meets with an egg then the person might get pregnant. A baby might grow inside the uterus.”
As students are first learning I do call this sex but once they have this I build that sex is bigger than just one act. It is heteronormative* to present reproductive intercourse as if it was sex. It could make students who are not interested in vaginal intercourse feel as if their form of sexual expression is less valid. At the same time, the students that I work with are often overwhelmed by all the new information and have difficulty navigating all the nuances. When I call this form of sex, “sex”, I do match it with vaginal sex, reproductive intercourse, or intercourse to allude to the idea that there are other forms of sex.
*If you’re not familiar with the term heteronormative, it refers to when heterosexuality is used as the default. It also refers to other lifestyles that are considered the default. For example, a heteronormative definition of family would be if you used, implicitly or explicitly, a husband, a wife, and children as the definition of family.
Wet Dream: “Sometimes when you’re sleeping you have have sexy feelings. These feelings can be so good that you may get really excited in your sleep. You may feel so good that fluid comes out of your body.”
If they know erection and ejaculation, you can use those words too but I try to limit my use of those words if I’m not confident they have a full conception of the terms.
People with vulvas can have wet dreams too! Regardless of whether there is ejaculation, having organisms and arousal during sleep can be scary. It is an important thing to prepare children for as their bodies change with puberty.
Sex: “Sex is when two people have sexy feelings they want to share with each other so they touch each other’s private parts to make each other feel good.” You can expand it further, “A person might put their penis inside a person’s vagina. Sometimes people kiss and lick each other’s vulva or penis. A person might put their penis inside a person’s anus*.” If they ask why someone has sex, I would answer “Either because they want to have a baby, because they love each other and they want to share those feelings, or because they want to have fun.”
*I would use butthole if I thought that was a word the person understood better. In this definition, I’ve defined sex as anal, vaginal, or oral intercourse.
Sperm/Egg: The cells inside a persons body that have genetic information.
Not all folks will grasp the concept of genetic information but they will probably know that it means scientific or medical information.
Next week, well be covering reproduction in Human Sexuality 101 so look check out the curriculum for that section for more information.
In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.
This video was filmed at the Healthy Relationships and Sexuality Conference in California 2010. What’s special about this conference is that it was organized by people with disabilities (and their allies) for people with disabilities.
I’ve highlighted some of my favorite quotes from the video. My main point in posting it, is not so much that you watch it and learn a bunch of facts, but rather use as an example of a teaching tool. Creating a video like this is a wonderful learning experience and helps give purpose and permanence to the expression of ideas.
“Sexuality needs to be part of the service planning process” – “It’s not the people with disabilities who are uncomfortable but the staff who are helping support them” – ” “The definition of support needs to change as the person changes” – “A person with a disability can always find love” – “Disability does not define me. The way I think about other people and the way I treat other people: that’s what defines me” – “Maybe people will eventually become more open to us” – “If you get asked a frank question, give a frank answer”
Many of the teaching strategies that you use when teaching human sexuality you also use in many other contexts. Autism Internet Modules can help you learn teaching strategies like the ones listed below (currently they have 37 modules and they are always adding more). The modules give a really complete overview (they can be a little boring but overall they are very helpful). Some these may be a review but others may be something you have heard of but aren’t quite sure what it really is. What’s especially nice is often the expert who developed the technique is the one teaching the module. Just a little warning- you do have to set up a log in. Many of these interventions have been specifically developed for people with Autism Spectrum Disorders- but not all of them!
Antecedent-Based Interventions (ABI) – Differential Reinforcement – Extinction – Functional Communication Training – Language and Communication – Naturalistic Intervention – Overview of Social Skills Functioning and Programming – Parent-Implemented Intervention – Peer-Mediated Instruction and Intervention (PMII) – Picture Exchange Communication System (PECS) – Pivotal Response Training (PRT) – Preparing Individuals for Employment – Prompting – Reinforcement – Repetitive Patterns of Behavior, Interests, and Activities – Response Interruption/Redirection – Rules and Routines – Self-Management – Social Narratives – Social Skills Groups – Social Supports for Transition-Aged Individuals – The Incredible 5-Point Scale – Visual Supports
For those of you who attended the workshop, in the workbook starting on page 34 there is a table with examples of strategies. Some of the strategies come from Autism Internet Modules.
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!