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 was really fun teaching about gender roles. Gender roles and gender identity were difficult concepts. Most of the people in the group talked about wearing a dress as if it made you a women. So we talked a lot about biology and society and how those both influence people and gender. We also talked a lot about gender stereotypes and how they can put limits on how people act.
Our big activity this week was making gender stereotype collages. We found images from magazines that we thought reflected gender stereotypes and made them into a collage. We talked about which stereotypes were easy to break and which ones were hard to escape. The men found a lot of images they thought were more realistic depictions of women. In the future, I think it could be fun to structure that into the activity.
Throughout the entire session, one of the things that was really difficult is that there are gender roles, gender stereotypes, and gender identities. They influence each other but they’re different. It’s not so critical that folks in the class understand the precise definitions, but it might have been helpful to walk through that a little bit more concretely. On the other hand it led to really nice discussion questions, for example one participant asked “What makes a person their gender?”
We used a couple videos in class. The first video focused on gender identity. It shows person in the process of gender reassignment. Over the three year period you can see how their external appearance reflects gender identity more and more.
The second video is more about gender stereotypes and gender roles. One of our participants brought up how boys don’t like to play with “girl toys” and I remembered having seen this and pulled it up (it’s nice when it works out like that!).
If you want to take a stab at teaching this on your own, hear are the materials we used.
An easy ready guide about abuse and neglect was forwarded along to me (thank you, Jennifer). I think most agencies have adapted abuse and neglect information readily accessible to the individuals they serve and comparatively, I thought this one was nicely done. It’s made with a product called Symbols for Life. Essentially, it’s a picture package featuring individuals with developmental disabilities. One copy is $298.00 and then additional copies are discounted. A lot of times, I like to make things with pictures of the individual I’m working with, but there are times when that is inappropriate/unfeasible. I think this could be a good source for those occasions.
Here’s the Say NO to Abuse pdf if you want to check it out.
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.
I’m just going to be honest. I think sex shops can be a little creepy. It really pushes my comfort zone to support someone purchasing sex toys not because I’m uncomfortable with the individual I’m working with’s sexual expression- I’m uncomfortable the sexual of expression of general patrons of the store. Usually the line between sexual exploitation and sexual affirmation is a nice, clear, thick, black line. But in a sex store it’s gets blurrier and it can be difficult to navigate. It pushes me to think about my own biases, but at the same time I don’t think all sex shops affirm sexuality equally.
That’s part of the reason I was so glad to stumble upon “Come As You Are”. The other reason is because they actually know things about serving people with disabilities. “Come As You Are” is a sex shop located in Canada (great for Torantoins, but less than great for Illinoisians). They have a wonderful website, are knowledgeable about people with all different abilities, and are responsive to questions. If you know of place that is safe and accessible or at least responsive to the needs of individuals with disabilities, please share.
The store was featured in this video which I found to be very enlightening in regards to things to consider when supporting someone with purchasing a sex toy. For one, I wasn’t really aware of some of the options out there. The video also goes into several was to match ability needs with sex toy functioning. I will warn you that streaming quality is not that great, but the content is excellent.
Another thing to think about is the use of wedges and ramps for sexual exploration and sexual expression. The Liberator is probably the most popular line of sexual furniture. They look just like the wedges used in the exercise room of our day program (except the ads all have beautiful scantily clad women on them). Using tools for sexual positioning may be the only way some individuals can participate in intercourse or other sexual activities. The how to use videos on their website are more erotic than instructional. There are videos online geared toward instruction. They are explicit, but the participants are fully clothed throughout. Click here for the male positioning and here for female positioning.
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.”
Songs for Your Body is a curriculum comprised of, you guessed it, songs. They cover hygiene, abuse, masturbation, contraception, sexually transmitted infections, and sexual health. You can preview the songs on their website- I liked the masturbation songs. In general, they’re a little hokey but I think it’s a good example of thinking outside the box. The CD is $15.41 including shipping and handling and comes with a booklet of lyrics and activities.
I have to say, the puberty session went great! It was just at the right level. Here are the activities we did…
Defining Puberty: This was the language we used to define puberty: puberty is your body changing from a child’s body to an adult’s body. It causes changes to your body inside and outside. Everyone goes through puberty but it might happen at different times and people’s bodies change to look different. Puberty is a time when you start to get sexual feelings. You don’t have control over going through puberty, but you do have control over how you react to it. It’s normal to have mixed feelings, some good feelings and some negative feelings. This definition highlights several key features of puberty (it’s in some ways different and some ways the same for everyone, it’s a natural biological process, it can be an adjustment).
They Tell Me I’m Going Through Puberty: This is a story told from the point of view of a teenager about the changes that are happening during puberty. This exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. The narrative format may help students relate to the changes that are occurring.
Boys/Girls/Both: In this activity, participants were given a series of cards each with a change that happens during puberty. They decide if these changes happen to boys, girls, or both. Again, this exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. Many of these changes are repeated from the first exercise although more are introduced. Each card separates out each change as concrete steps.
Puberty Worksheet: This worksheet is a check in on the changes participants have experienced, how they feel about these changes, and changes they anticipate. The worksheet was designed to help students anticipate some of the changes that will happen during puberty and help them to be aware of the changes that are happening in their own body. We use both open ended and multiple choice questions to stimulate different levels of thinking.
Diversity:We showed power point slides with pictures of several people showing a diversity of bodies and ages. Students were asked, “Which ones are going through puberty?”. This activity reinforces the concept that puberty is in some ways different and some ways the same for everyone. One thing that became evident was that the students had difficulty understanding that children hadn’t gone through puberty but the were quick to grasp onto the idea that adults are finished going through puberty. We used a few favorite characters to help the kids get a little excited about the topic.
Click on the Links Below to AccessMaterials
These models are from http://jimjacksonanatomymodels.com/ It can be a little difficult to find the kind of anatomical model that you want for a sexual education class. I’ve used these models and I think they are very instructive. They are realistic so it may not be appropriate for all audiences but a lot of folks need things this concrete. If you’re teaching condom use, make sure to use vinyl condoms (latex condoms can hurt the models). The cost of the models ranges from $180 – $660 depending on what you’re getting. It’s an investment, but a great teaching tool. WebMD has nice anatomical line drawings that are okay to print for free. http://www.medscape.com/features/ald/repro Once you get into color photos, they usually ask you to pay. You can probably find some on the internet that don’t have water marks (like on webmd or mayo clinic ) but they are usually copyrighted. This site will give you a lot of options available for purchase http://www.fotosearch.com/photos-images/reproductive-system.html This site has more medically technical options (they also have online interactive models, but those are pretty technical too). http://catalog.nucleusinc.com/generateexhibit.php?ID=9591
Sandra Byers, Shana Nicholas, Susan Voyer, and Georgianna Reilly have an paper coming out in Austim this month. They survied 141 men and women with “high functioning autism and/or Aspergers syndrome” (AQ score of 26 or greater) about their sexual wellbeing. You can read the abstract of the article for free or pay for the entire article but I’ve summarized the interesting findings below.
Gender Differences: The men had greater sexual well being but less sexual knowledge. They weren’t different in all areas; for example, they were the same in terms of sexual activity and sexual self esteem. They were different in areas such as arousability and sexual desires (this is pretty consistent with neurotypical gender differences).
Autism Symptomatology: Folks who reported less autism symptomatology had better sexual well being but not necessarily more sexual activity (both with partners and alone). The folks who reported more autism symptomatology reported more difficulty with the other parts of sexual life like assertiveness and desire.
Relationship Status: Folks in romantic relationships relationships reported better sexual well being. Everyone in the study had been in a relationship at some point so this is comparing the folks currently in a relationship from those not in a relationship at this time.
So how did they define sexual well being?
The looked at sexual well being in two main domains: dyadic (with another) and solitary (on your own). In these domains they examined affection, genital activity, sexual assertiveness, sexual satisfaction, arousability, sexual desire, sexual thoughts, sexual anxiety, and sexual problems.
One of the take home recommendations for education relates to the two domains. These reachers highlighted the importance of sexuality education that teaches about partnered sexual expression and solitary sexual expression. They also recommended that sexuality education specifically focus on developing a positive sexual self-image. I can’t disagree with them there!
I’ve been working on a training for parents who are primarily Spanish speakers so I’ve been looking for materials available in Spanish. I hit the jackpot when I translated my search terms into Spanish. I thought you might be interested in my Spanish Resource List.
Free Resources in Spanish Specific to Youth with Disabilities
- Guide to teaching human sexuality http://www.asturias.es/Asturias/descargas/PDF%20DE%20TEMAS/Asuntos%20Sociales/guia%20de%20educacion%20sexual%20y%20discapacidad.pdf
- Guide and curriculum for teaching human sexuality http://www.unfpa.org.uy/userfiles/publications/62_file1.pdf
- Guide and curriculum http://invisibles.org.ar/blog/wp-content/uploads/2010/08/200810081657070educacionsexual.pdf
- Website with information, movies about sexuality and disability, and advocacy information http://sexualidadespecial.blogspot.com
- Website and video http://www.educagenero.org/discapacidad.html
- Spanish only article: http://www3.usal.es/~inico/actividades/actasuruguay2001/9.pdf (Link to the article, Educación sexual y discapacidad).
- Curriculum (also available in English) https://asdsexed.wordpress.com/2012/04/06/free-curriculum-educator-version-teacher-version-spanish-version-9/
Books in Spanish and English Specific to Youth with Disabilities
- “The Rules of Sex: For Those Who Have Never Been Told” by Nora Baladerian in English or Spanish for $25.00 ($17.00 pdf download) http://www.norabaladerian.com/contents/rules-of-sex-spanish.htm (takes you to the Spanish version of the table of contents) http://www.norabaladerian.com/books.htm (takes you to the order page).
- “Period: A Girl’s Guide” is written for young women to explain menstruation http://www.amazon.com/Periodo-Period-Spanish-Language-Edition/dp/091677399X (takes you to the amazon page for the Spanish language version of the book). The book is $10 plus shipping and handeling.
Free Parent Resources in Spanish and English not Specific to Youth with Disabilities
- Newsletters with developmental messages (in English and Spanish) http://www.siecus.org/index.cfmfuseaction=page.viewPage&pageID=632&nodeID=1
- A recourse guide for talking about difficult topics including sexuality (in English and Spanish) http://www.childrennow.org/index.php/learn/twk_sex
- Information http://www.advocatesforyouth.org/component/customproperties/tag?tagId=45 (link takes you to their Spanish language articles)
- Information http://www.plannedparenthood.org/ (just Click the option for the Spanish version of the site)
I came across this looking for educational resources for teaching about puberty. It is not specifically designed for students with intellectual and/or developmental disabilities but is very well done and could serve as a basis for instruction. It’s available to stream free on YouTube and I’ve posted it here. You can also find it available for purchase if you would prefer a DVD.
This is the puberty episode…
The series also has a reproduction episode but it’s presented with the baby as a “body snatcher” which I think would be very confusing.
This series of parent news letters is available in English and Spanish. They provide guidelines for families in regards to talking about sexuality topics. They are not adapted for children with special needs, but I thought they could be useful regardless (especially the more general issues). On this page the also have a fact sheet (English only) that has a lot of data about teens sexual behavior. There is very little (almost no) information about the sexual behavior of adolescents or adults with developmental disabilities but I’ve summarized the research that is available below. (You would need access to an academic library to read the full articles cited below for free). Despite the limited research, most people (be they parents or professionals) come to my workshop because they already know people with disabilities have sexual intersts!
There have been several studies that suggest that individuals with ASD have a desire for intimate relationships (Henault & Attwood, 2002; Van Bourgondien, Reichle, & Palmer, 1997; Ousley & Mesibov, 1991). These studies may define “interest” as instances of sexual behavior. For example, one study that reports the majority of 89 individuals with ASD living in group homes in North Carolina displayed some sort of sexual behavior (Van Bourgondien, Reichle, & Palmer, 1997). Other studies define “interest” as self-reports of sexual activity and knowledge (Ousley & Mesibov, 1991). In both cases they are reacting to earlier studies that reported that individuals with ASD (and other disabilities) had no interest for intimate relationships with others (Despert,1971; Rumsey, Rapoport, Sceery,1985) and common myths that report individuals with ASD to be asexual (Irvine, 2005).
Despite the trend to move toward a more accepting view of sexual interest among individuals with ASD and other developmental disabilities, there remain questions as to what extent individuals with disabilities are interested in sexual activity. For example, most studies look at sexual behavior however individuals may be interested in intimate relationships even if they are not displaying sexual behavior. Some studies have shown that individuals with more knowledge are less likely to want to engage in sexual activity (Konstantareas & Lunsky,1997); however it seems that the relationship between access to sexuality education and the desire for support with relationship development remains unclear.