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?”

Sex Ed in the News

ABC just did an article about teaching human sexuality to students with intellectual disability.  They focus on a New York school that has incorporated teaching sexuality into their mission.  One of my favorite lines from the article is that “Sex ed is not a goal, but a process.”  They mention in the article that New York City schools mandate sexuality education and I just wanted to comment on this, based on my experience in Illinois.

Although there is not specific information that addresses the willingness of school administrations to offer comprehensive sexuality education to individuals with ASD, there is information available for offering this type of education in general.  As part of the Affordable Health Care Act federal funding was opened up for comprehensive sexuality education called PREP- Personal Responsibility Education Program as well as Title V- abstinence only education meaning that states get to choose the type of sexuality education offered and may offer both (SIECUS, n.d.).  For fiscal year 2010, 43 states applied for PREP funding which means their sexuality education must cover abstinence, contraception use, healthy relationships, adolescent development, finical responsibility, educational and career success, and healthy life.  Until PREP funding was aproved funding was only available for Title V abstinence only education.

Even if comprehensive sexuality education is being offered in the schools, that does not mean it is being offered to individuals with disabilities.  Under the Individuals with Disabilities Education Act, students with Individual Education Plans have access to adapted general education curriculum.  At this point, my understanding is that, in Illinois this means a student can participate in a general education sexuality class room unsupported, with an aide, or opt out.  If the student (or more accurately, the student’s guardian), opts out, then the child’s special educator is required to adapt the curriculum with parental permission.  There are no standards for what that adaptation must cover.  Teachers may be working with professionally developed curriculum for individuals with disabilities, independently adapting a general education curriculum, or may be creating their own curriculum from scratch.  Due to the diverse needs and strengths among individuals with students with disabilities there may be great variability in how long it takes to cover various topics, to what depth topics can be covered, and what further adaptations may be needed.

Autism Now- A Resource

Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.

They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material.  I’ve also included links to the slides- this is a direct link, you don’t need to register.

Slides:  “Sex is when people use their bodies together to share love and pleasure.”

Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”

And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet-  “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”

In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships.  These include general information as well as parent tips.

I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.

I just wanted to link to one other power point presentation that I thought had a lot of good information.  “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School

Gender Identity and Disability

During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth.  Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.”  But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender.   This topic also raises issues related to guardianship and self determination.  Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with.  For people with disabilities, who gets to make that choice?

Could having a developmental disability lead to difficulties with gender identity?

This is a little difficult to answer.  There are very few studies ask this question.  In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect.  However individuals with ASD may be tapped into to services which might account for this difference.  When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.

Given how little is known, where can I go for more information?

There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.

Gender Spectrum is a great place to start looking for more information.  This is a website that can link families with medical, mental health, social, and legal services.  The have great definitions of all the different terminology and a great overview of gender development.

Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families.  For me, it was really eye opening and helped me connect this topic to real people.

On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler.  The story had almost 2,500 comments 5 days later.  They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie.  I got e-mails from confused parents who had their aha moment when they read Tyler’s story.  And sure, I heard from the haters”.  This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.

*This links to the abstract of the article.  Unfortunately, the full text of the article is not available for free online.

Implementing Sexuality Education

When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.

I’m going to present a model for one approach for implementing sexuality education at the agency level.  This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.

Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.

Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.

Phase III: Invest in curriculum and teaching materials-  you don’t need much to start out with, but I think it’s helpful to have something and you can always add later.  Having said that, I’ve never come across anything that didn’t need some adaptation.

Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education?  Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)?  What will your process be for getting individuals receiving services involved?  (I’ve attached a sample Referral Form).

Phase V: Start Implementing!

Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.

You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”.  Here are some questions to ask yourself in regards to what you can do at a personal level.

  • Where could I fit in with what my agency is already doing?
  • How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
  • How can I incorporate human sexuality concepts into programing?
  • What can I do to advocate for human sexuality education?

Supporting People with Disabilities with BEING Sexuality Educators

What does supporting people with disabilities with BEING sexuality educators?

It’s all about self-advocacy!

According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”

As sexuality educators, individuals with disabilities can be…

  • Safe people for their friends to talk to
  • Knowledgeable sources of information
  • Leaders and co-leaders in educational sessions
  • Models of healthy sexual relationships
  • Advocates for raising awareness about sexuality topics
  • Fill in the blank ____________

This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.

Another great resource for learning more about sexual self-advocacy is  The Green Mountain Self-Advocates.  They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).

SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.

Teaching About Joking

Here is an activity you may want to try out for teaching about joking in context.  Joking is really difficult because it’s very nuanced.  It can be a great way to connect with people but also hurtful.  I also think it is difficult because of the educational context- jokes that aren’t appropriate at school, work, etc. It might be okay in some places but it feels weird saying- “yeah, it’s okay to tell fart jokes with your friends.”  It really easy to cross over from actual social skills to formal social skills.  

Free Curriculum- Parent Version, Teacher Version, Spanish Version

ImageI’m really excited about this free curriculum, “Sexuality Across the Lifespan” by: DiAnn L. Baxley and Anna L. Zendell.  It has versions for educators, teachers, and Spanish speakers.  You can view the curriculum by clicking on the links below.

What makes this special?  They do a nice job at adjusting lessons for different age groups, giving ideas for supplemental activities, and giving ideas for incorporating the topics into routines.  The parent version really focuses on how to reinforce healthy sexual development through interactions and daily routines.

This curriculum in not comprehensive but does have sections on social skills, dating, sexual abuse, puberty, and anatomy.  I hope you find this useful!