The Ultimate Guide to Sex and Disability

the guideThis 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.

Privacy

“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.”

Music- A Different Way to Teach Sex Ed

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.

Human Sexuality 101 Week 3- Puberty

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

Anatomical Models and Drawings

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

New Research Regarding Autism and Sexuality

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!

Spanish Language Resources

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

Books in Spanish and English Specific to Youth with Disabilities

Free Parent Resources in Spanish and English not Specific to Youth with Disabilities

Video Teaching Tool- The Body Story

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.

Parent Newsletters and Research about Sexual Behavior and DD

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.

Developmental Messages for 0-5 Year Olds

In The Birds and the Bees workshop we talk a little bit about how we start teaching folks about sexuality from birth. We mostly teach sexuality through how we socialize and interact with infants.  SEICUS has a set of guidelines for being more intentional about promoting healthy sexual development in 0-5 year olds.  For me, some of the developmental messages and core concepts where exactly where some of the guys I’ve worked with were at, even if they were much older.  I especially like the discussions about sexual abuse prevention (pages 56-57), masturbation (45-46), and sexual curiosity (47-49).  I also think you could get some great ideas for teaching about gender roles (59-61) that you could do outside of what may be considered a sex ed class.  For each of the 19 topics they discuss they include a discussion section, key messages, additional messages for older preschool children, and how adults can help.

You can download the guidelines for free… RightFromTheStart

Relationship Pyramid

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.

How to be in Middle School

In the crushes unit of Human Sexuality 101 for middle school, we used this video on handling a crush.  We were talking about this during The Birds and the Bees workshop in Champaign today and it reminded me that I should probably highlight this resource on its own.

The How to be in Middle School series covers topics such as how to invite someone to a dance, how to go to a dance, first kiss, handling kissing games, and many more topics (including less relationshipy videos like how to clean your room quickly).  The videos present clear rules and how to guides.  We planned an activity around the rules in our group.

Sexuality Education Policy- An Example

I know many of you are interested in writing a sexuality policy for your agency to help guide decisions around teaching human sexuality.  Here is an example I thought might be helpful from Florida’s disability council.

What I really like about this policy is that they organized it around student responsibilities and educator responsibilities.  I think this is a nice model for conceptualizing a sexuality policy.  Below, I’ve highlighted the “Quick Reference Fact Sheet on Choice and Education Instruction” which is part of the policy.

Free Curriculum and Parent Resources

A lot of the curriculum we used for the puberty unit of our Human Sexuality 101 group was adapted from “Teaching Sexual Health“.  They are a group out of Canada that provides support for teachers and parents.  I used their general curriculum but they also have a curriculum for students of differing ability levels.  They have great resources for parents including “webisodes” that give examples of parents talking to kids about sexuality topics.  The website is very well organized and easy to use!

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Menstruation Plan

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)

3.  Practice

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 upwhat 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.

ImageI 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.

Teaching Videos

There are many videos out there that are excellent for instruction and also for expanding your personal understanding of sexuality topics.  I have a few on my resource list but wanted review a couple that are available.  Click on the link to be taken to the page where it can be purchased.  I’ve included previews and prices (you can get the videos cheaper for personal use- these are the instructional prices).

Is Love Enough? Is a documentary about parenting with disabilities.  It’s $195.00

Monica and David is a documentary about a couple with Down Syndrome. $200 (but sometimes is on sale for $100).

The Kiss is a 52 second video featuring two actors with Down Syndrome.  It is short and poignant.

Bumblebees is a short video made by an individual with autism following his first date.

Bumblebees from Jenna Kanell on Vimeo.

Despite being told as a child he would never speak or walk, Vance accomplished what doctors thought was impossible. But now he has a new challenge: dating.

Made for the 48 Hour Disability Film Challenge.

Prerequisites:
Genre – Romantic Comedy
Setting – Living room / park
Elements – Comb / balloon
Theme – A reunion

When I see “Sexuality and the Arts” on the SIECUS topics list, I admit, I can get a little overwhelmed with trying to explore this topic in a way that is relevant to individuals with intellectual and developmental disabilities.  But I think the Sprout Movie festival is a great place to start.  Here is one of their Poetic Shorts, “How do I know?”