Support Planning

Guest Room

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Guest Room is a short film Written & Directed by Joshua Tate and starring Lauren Potter (“Glee”) and Michael Iovine.  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.

Tools for Teaching Human Sexuality

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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!

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The Ultimate Guide to Sex and Disability

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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.”

Facilitated Sex

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What is facilitated sex?  This brief video explains what facilitated sexual activity is and some of the considerations.

Dr. Mitchel Tepper is an expert in the area of sexual health, disabilities, and medical conditions with a specific focus on physical disabilities.  His website can connect you with a lot of great information (I especially like his blog).

Some things to keep in mind about facilitated sex…

  • Facilitated sex is a continuum.  Dr. Sarah Earle suggests it might include providing sex education, fostering an environment that allows intimacy, the procurement of sexual goods,  and arranging for paid-for sexual services.
  • Many individuals with disabilities would be unable to participate in many parts of sexual expression without some level of facilitation.
  • It’s not that abuse and victimization aren’t concerns- they are!  It is also important to consider how to support individuals with exploring sexual pleasure and sexual facilitation is part of that picture.

Program Development Associates Online Store

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This online store features 33 dvd based resources for teaching human sexuality to individuals with intellectual disability.  They have resources for…

  • All age ranges
  • Boys and girls
  • Nurses
  • Advocates

Prices range from $35.00 to $250.00 with everything in between.  This could be a great place to find what you need.

YAI Online Resource Center

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YAI is a agency out of New York that has a relationship video series I really like.  They also have developed a determining sexual consent manual (which you can get through their online resource center).

Unfortunately, this is not a free service, but as far as somethings go, it’s not too bad.  For $150 a year you can buy membership to the YAI’s online resource center.  You then get to download tons of materials.  They have a lot on relationships and sexuality.  Some of it is geared toward staff/educator preparedness but they also have lesson plans.  Many of the items are available to purchase separately without buying membership to the resource center (and other items, like the relationship videos, aren’t available to download).

You can check out some of the resources available during a free trial.

Sexuality Education Policy- An Example

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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.

Sex Ed in the News

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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

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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

Are Individuals with ASD at an Increased Risk of Sexual Abuse?

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It is difficult to determine the exact risk of sexual abuse for individuals with ASD (it’s hard to get a good report of sexual abuse among the general population).  The first national survey reports victimization rates of 27% for women and 16% of men among the general population (Finkelhor et al., 1990). A study has shown that children with disabilities are 1.7 times more likely to experience sexual abuse however all children with disabilities were examined, not just individuals with ASD (Crosse, Kaye & Ratnofsky, 1993). Individuals who are caregiver dependent may be at the highest risk because family members, family acquaintances, and paid caregivers are the most likely to commit sexual abuse (Mansell et al., 1996). Difficulties communicating, lack of knowledge of sexual norms and activities, and isolation may contribute to increased risk of sexual abuse among individuals with ASD. Sexuality education may provide opportunities to for individuals to be better able to communicate and better understand social norms and activities. Furthermore if the support systems of individuals with ASD are in openly talking about sexuality it may create a climate where this abuse is less likely to happen.  The Department of Human Services in Illinois has started a project to end sexual violence against women with disabilities.  I’ve gotten to meet several people working on the project and they are very knowledgeable and dedicated.  I hope they succeed!

Hierarchy: Masturbation Training by Lisa Mitchell

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Below is a “Hierarchy: Masturbation Training” by Lisa Mitchell, LCSW-R at Penn State.  Her plan for what she calls, “private touching”, was specifically developed for individuals with Autism Spectrum Disorders, but I think it is a good general framework.  The hierarchy goes from lowest level of support to highest level of support.  Across the board, masturbation is a topic people want more information about.  I think this is a nice way to think about what kind of education or training is available as well as what you might want to try before moving on to something more intensive.  I have also included a link to her entire powerpoint.  She covers other topics/tips you may find interesting (relationship checklist, key concepts for topic areas, teaching techniques, problem behaviors).

  1. When appropriate, work with families and/or residence to establish a visual “private time schedule.”
  2. When appropriate, supply individual with lubricant, explaining that it is for use during “private time.”
  3. Meet with individual. Present illustrations of same sex persons masturbating, in conjunction with verbal explanation regarding technique.
  4. Meet with individual. Use illustrations and anatomical model in conjunction with verbal explanation of technique.
  5. Meet with individual. Use anatomically correct dolls to demonstrate appropriate masturbatory technique, in conjunction with verbal explanation.
  6. When appropriate, supply masturbatory aids such as body pillows, magazines, collages of stimulating pictures, vibrating pillows, masturbation sleeves, masturbation pumps, or vibrators. Explain safe usage of such aids.
  7. Meet with individual. Arrange for multiple viewings (when necessary) of instructional masturbation movies “Handmade Love” for males, or “Fingertips” for females. Viewings should occur in the individual’s bedroom or the private location where masturbation will be allowed to occur. Trainer may need to supply a verbal explanation while simultaneously viewing the tape to reinforce principles. (I would have the person watch on their own before feeling the need to view with another present. In general I think the videos are very good but very explicit. You could use the video in place of the verbal instructions indicated in the hierarchy).
  8. For individuals with more significant challenges, consider use of ABA type
    approach (preferably done with relatively unfamiliar trainer) to teach more
    successful masturbatory technique. Shape up steps one at a time (e.g. “Pull pants
    and underwear down”, “Lay on belly”, “Put pillow between legs”, “Rock from side to
    side”. Or “Pull pants down”, “Sit on bed”. “Put fingers around penis”, “Rub up and
    down, up and down.”) – I have heard of this method, but I do not know anyone personally who has ever instructed on masturbation at this level.  I would want to have a very comprehensive plan on how this would be implemented, full team support, and special attention paid to protecting the individual being instructed and the person doing the instruction.  

Let’s Talk About Ability and Sexuality

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http://vimeo.com/17317232

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”