Raising an individual with a disability presents a different set of obstacles then an abled individual may, but one topic that all parents must address is sexuality. Individuals with disabilities are sexual beings and therefore deserve an education on sexuality. While parents may acknowledge this need, finding resources and strategies to present the information may be more difficult if you are raising an individual who requires a different method of learning.
The Sexuality Resource Center for Parents provides a well rounded variety of information pertaining to sexuality. The website includes a section of information labeled “for all parents” that contains subjects they believe are useful for all children. In addition, they provide sections titles “For parents of children of typical development”, “For parents of children with developmental disabilities”, and “For parents of children with physical disabilities”. In each section, you can find a variety of information such as basics, specifics, activities, and additional resources. They also include tip guides!
The Sexuality Resource Center for Parents works to provide a better, comprehensive information base for parents to use when addressing sexuality to their child. The variety of knowledge is extremely useful when trying to find information to meet your child’s specific needs. In their own words, their mission statement claims “It’s time to acknowledge that children with developmental disabilities will become adults with sexual feelings, and as such, we must provide them with the information and skills they’ll need to become sexually healthy adults.“
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.
Guest Room is a short film Written & Directed by Joshua Tate and starring Lauren Potter (“Glee”) and Michael Iovine (lovelandfilm.com). It won the Audience Award (Competition Short) at SXSW 2015.
I think you are going to love this movie. It’s beautiful, emotional, and honest. I could easily see this being used in a human sexuality classroom to help discuss parenting, consent, and support from families. It follows the story of a young couple who are faced in a situation many young couples find themselves in, an unexpected pregnancy. Like many young couples, the response of their families is shock and disappointment and this makes it difficult to determine their own feelings, hopes, and wants.
There was one statistic that was mentioned in the film that I had not heard before. It said that a women with Down Syndrome has a 50% chance of having a child with Down Syndrome. I did a little digging to see if I could find out more and received some help from The Tech Geneticist a project from the University of Stanford which seeks to increase the public understanding of genetics. About half of the eggs of a women with Down Syndrome will have an extra 21st chromosome (similar to what is described in this post http://genetics.thetech.org/ask/ask296). Her actual chance of having a child with Down Syndrome is less than 50% because fetuses with extra 21st chromosomes are at increased risk of complications. According to the National Down Syndrome Society only about 50% of women with Down Syndrome are fertile (ovulate).
It’s trickier when it comes to thinking about the father. Much less is known about the heritability (chance of passing a genetic trait on) of Down Syndrome for men with Down Syndrome, but it may be that their sperm that carry two 21st chromosomes would be less viable than their sperm that only have one. Both the Tech Geneticist and the National Down Syndrome Society suggested men with Down Syndrome seem to have much lower fertility rates than their same age peers with two 21st chromosomes.
The 1 hour and 13 minute movie, Autism in Love, is about falling in love, wanting to fall in love, the struggle of understanding love, and heartbreak. More than that, this movie is about what it means to be autistic, how love shapes identity, and the support of family. There are multiple viewing options but it is currently airing for free on Independent Lens. It follows the stories of four individuals on the autism spectrum as they navigate issues of love and relationships.
Here is a guide for using the film as a teaching tool: Autism in Love Viewing Guide
This movie is more geared toward adults as the youngest person featured in the film is in his early 20s and much of the film centers on marriage. If you were working with older teens, you may want to focus on Lenny.
Sometimes when we teach human sexuality we don’t get into issues of gender identity. Even though this can be a complicated topic it is important for individuals with autism as they are able. Sometimes individuals with autism get hung up on rules and categories. A simplistic set of rules is a disservice as it doesn’t reflect the reality of individual experience. Here we can use gender to assist with introducing more fluid thinking more generally. When we teach this, we still use the idea of “rules” or “guidelines” we just provide a set of explanations that are more complex.
Teaching with gender identity is also important because you shouldn’t assume that you understand the gender identity of your students. It opens the door for students to understand their own gender identity and gives them tools for discussing it.
Most educators discussion gender identity with sexuality, and physical sex. Here’s a quick and simple video about the differences between gender identity, sexuality, and sex. There’s also a good intro to sexual orientation and romantic orientation. Like many videos for general guidance, it goes a little fast for novices so you may want to have them watch it once and then watch it again with starting and stopping. You can watch it here.
*In the video, Hank refers to a person named “John.” John Green (author) is Hank’s brother and this is part of a video series they have together where they refer to each other as their audiences.*
This can be used to explain the differences between identity, orientation, expression, and sex.
Here are some terms from the video that students may need defined and some suggestions for how to explain them.
- Sex: In this video, sex is defined as the physical sex organs (genitalia). A lot of time we think that everyone who has a penis is a man and everyone who has a vulva (or vagina) is a woman. But man/boy woman/girl is bigger than that. Would you consider yourself to be a boy or a girl? What does that mean to you? This is your gender. We usually use the words male/female to refer to physical sex organs.
- Intersex: Every once an a while, the body grows male AND female sex organs. If students want more depth, you could explain that this could mean having a penis and a vagina, or just an elongated clitoris and a vagina, or even having a penis and uterus, or a vulva and testicle. To explain these two points together you could have two drawing of people and ask students to group the genitalia how people often expect it to be and then have them move things around to show how they can be different. In discussing intersex, I like to reinforce that there is nothing wrong with being intersex but sometimes people may feel uncomfortable because it’s unexpected for many people. You may want to mention that people use to use the word hermaphrodite, but now that word is considered offensive.
- Gender Identity: What gender you feel you are. Gender is a wide spectrum and includes more than just girls and boys. There are people who identify as man/woman, neither, and in between. Learn more here using the Genderbread Person graphic. To reinforce this concept, use their list from above. Look for items on the list that could be true for either a boy or a girl. Explain that for some people their gender identity matches their sex but for other people it doesn’t match.
- Cisgender: When a person’s biological sex matches their gender identity. If a person with a penis identifies as a man, then they are a cisgender person.
- Transgender: When a person’s biological sex does not match their gender identity. If a person with a penis identifies as a woman, then that person may identify as a transgender person.
- It is important to note that this can be a sensitive topic for many people who do not identify as cisgender, and it is best to allow people to share their gender identity when they are comfortable.
- Asexual: A person who does not experience sexual attraction. You can learn more at:
- Sexual Orientation: Sexual attraction. This can include heterosexuality, gay/lesbian, bisexuality, pansexuality, asexuality, demisexuality, and many more.
- Romantic Orientation: Romantic attraction. This does not have to be the same as sexual orientation. A person might be sexually attracted to men but mentally and romanticallyy attracted to women.
- Sexual Behavior: Sexual behavior is the physical actions that a person does to express their sexuality.
- Gender Roles: Roles that people of a certain gender are expected to act. This can mean that boys are “supposed” to play with trucks while girls are “supposed” to play dress-up.
- It is important to note that gender roles are not set in stone and it is okay to not follow gender roles.
Here you can download our Genderbread Person activity, which is a worksheet that can be used to help students in their process of understanding their own identities and the meanings of these terms. There is a copy of the Genderbread Person graphic attached so it could be used to visually help students understand these concepts.
YouTube has a lost of great sexuality education resources but it can be hard to find among all of the “not safe for work” content. Here’s a few channels and videos that might be useful. One of the most difficult tasks sex educators report is explaining intimate acts. This can be uncomfortable and difficult so I’ve tried to focus on these difficult to teach topics. The videos may not be the best fit for the person/people you’re working with, but they can give you an idea where to start. The channels also have great resources for expanding your own education on sexuality topics.
The Center for Sexual Pleasure and Health (CSPH) has a lot of great videos. Is one of my favorite cites. In addition to having direct information they also have videos for parents (“Use Your Words” videos).
Healthchannel is a YouTube channel with short videos on a variety of health care issues including sexual health resources including a few I’ve listed below. The videos aren’t prefect. They don’t feature animations with people with disabilities and focus on heterosexual couples, but they give very precise, clear information.
Sexplanations is another YouTube channel. They have mini episodes on human sexuality topics from shared sexual behavior to STDs to anatomy. Again the videos aren’t perfect. They move a little too quickly than I would like, but I’ve selected a few I think could be helpful. They could also be good to expand your own understanding of various topics.
Individuals with physical, cognitive, or emotional disabilities have a right to education about sexuality, sexual health care, and opportunities for socializing and sexual expression. Healthcare workers and other caregivers must receive comprehensive sexuality education, as well as training in understanding and supporting sexual development, behavior, and related healthcare for individuals with disabilities. The policies and procedures of social agencies and healthcare delivery systems should ensure that services and benefits are provided to all persons without discrimination because of disability.
Human sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals. Its various dimensions involve the anatomy, physiology, and biochemistry of the sexual response system; identity, orientation, roles, and personality; and thoughts, feelings, and relationships. Sexuality is influenced by ethical, spiritual, cultural, and moral concerns. All persons are sexual, in the broadest sense of the word.
From Sexuality Information & Education Council of the US, www.siecus.org
This book by Miriam Kaufman, Cory Silverberg, and Fran Odette is eye opening. It’s written by people with disabilities for people with disabilities and focuses on the joys of sexual intimacy. As a typically developing person, it challenged a lot of my assumptions about sex and made me think about new things. Chapters include: Myths About Disability and Sex; Desire and Self-Esteem; Sexual Anatomy and Sexual Response; Communication; Sex with Ourselves; Sex with Others; Oral Sex, Penetration and Positioning; Sex Toys, Books, and Videos; Yoga and Tantric Sex; S/M; Sexual Health; Sexual Violence and Sexuality; Resources; and Glossary of Gender and Sex Terms. I want to share two passages with you.
Sex and Spontaneity
“We’re taught that sex is suppose to be spontaneous, something that just comes naturally (like ‘true love’). This belief is damaging to everyone, but is a real problem for people living with disabilities, because any amount of planning makes sex not spontaneous. Believing in this myth pretty much ensures a lously sex life.
While sex has many meanings, at its heart sex is a process of communication. Whether we are flirting from across a crowded room, giving someone head for the first time, or making love while listening to a piece of music that totally turns us on, being sexual is being in contact with ourselves and our surroundings. The idea that this process can happen without thinking, talking, or planning is ridiculous.
Maybe we are willing to buy into the myth of sexual spontaneity because talking about our desires is difficult. It’s risky, and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.”
This made me think a lot about the way I teach reproduction and sexual intimacy. I tend to focus a lot sexual behavior, but not as much on the planning and communication that comprises that behavior. Also, I do a lot of role playing, planning out what you’re going to say in advance, and scripting. I’ve never really done that around negotiating intimacy.
“If we were taught anything about sex at all when we were younger, many of us learned that sex was something private, inappropriate to talk about or do in front of others. Privacy becomes a requirement for sexuality.
From someone living in an institution, or using attendant services, or needing the assistance of someone else to facilitate communication, privacy is a completely different reality. The definition of privacy changes when you have no lock on your door, or when you request private time at a specific hours knowing that it will probably be written down in a log-book. This myth is one of those ‘no-win situations,’ because we’re told that real sex is a private matter and, guess what, you can’t have that kind of privacy.”
This passage really challenged me to think about how I teach privacy and how I teach about relationship types. I think sometimes I might ignore that what a lot of people think of as privacy and the individual I am working with reality of privacy are two disparate things.
I do wish this book focused a little more on people with intellectual disability and was written at lower reading level. I do think people with ID/DD could read it with support, especially sections. Much of the book is testimonies by people with disabilities and I think these passages could be great teaching tools. There are also suggested exercises- one of the exercises was about looking at your body. I teach antimony all the time, but I don’t think I’ve ever said, “when you’re at home, alone in your bedroom, look at and feel your body and check out the parts we’ve been talking about, you can even use a mirror.”
A workshop participant put me in touch with this awesome resource (thanks Cate!). Impact is a newsletter from the University of Minnesota’s Institute on Community Integration which is part of their Center for Excellence in Developmental Disabilities. They have many products and services that you may find useful (many of which are available online or at little cost). Their newsletters contain ” strategies, research, and success stories in specific focus areas related to persons with intellectual, developmental, and other disabilities. ”
The sexuality issue has several interesting articles written by individuals with disabilities, service providers, family, and community members. In addition to the articles, the newsletter provides information about additional resources in several areas: education, parent support, advocacy, sexual health, and sexual safety.
The story in Impact that touched me the most was one about two men who were harshly punished for their love for one another while institutionalized but were finally able to be married. Once they were both living in group homes and reunited…”they decided they would not live together, they would not have sex, until they were married. They had been punished so often, told continuously that they were dirty, sinful, hateful creatures, that they needed to get married ‘liked other people.'” Dave Hingsburger* commented “How we hate the hearts of people with disabilities! We have caged their bodies, disfigured their genitals, drugged their thoughts. But we have never, ever captured their hearts or controlled their spirits.”
*The link in the text is to Dave Hingsburger’s blog. He is the author of several resources for teaching human sexuality and abuse prevention to individuals with intellectual and developmental disabilities. The resources can be found at Diverse City Press.