Learning from Temple Grandin

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.

 

Guardianship and Sexuality

This is one of the most common questions  regarding sexuality and disability…

If you are a guardian of an individual with a developmental disability what is your role and legal authority regarding decisions on sexual activity?

According to the National Guardianship Association:

Guardians should apply the professional judgment of qualified clinicians in developing individualized plans. These plans for services and supports should address competencies which the ward possesses, areas where education and
training are required, and current incompetencies which may implicate a duty to protect the individual. What this means in practical terms for professional guardians can be stated in four simple principles:

  1. Know the law and regulations in the jurisdictions of your practice.

  2. Know the bounds of your decision-making authority within your professional standards and ethics.

  3. Know the extent and/or limitations of your decision-making authority imposed by the court.

  4. Utilize treatment teams and ethics committees whenever possible.

One of the important pieces of these guidelines is understanding the law and regulations in your individual state.  Sterilization and abortion are two major sexuality related decisions that often have specific laws and regulations regarding their practice.  These have evolved from a long history of forced sterilization of individuals with disabilities and there continues to be controversy today (for example this recent case).  Other decisions such as access to sexuality education, use of contraceptives, marriage,  procreation, and access to sexual activity are often outside of the purview of the courts.  In these cases  guardians are instructed to use their own judgement based on:

  1.  The decision as the ward would when the ward’s wishes are known or can be established by interviewing the ward, their friends and family, or through a preference stating document such as a living will. Or…

  2. The representatives values and beliefs in order to make the decision they feel would best serve the ward.

And must follow this stipulation:

The surrogate decision maker cannot give consent for sexual activities, but
must protect the rights to privacy for their wards when dealing with issues such as contraception or marriage, if the situation is appropriate.

Guest Room

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.

 

Autism in Love

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.

Promoting Justice: An Essential Resource Guide for Responding to Abuse Against Children with Disabilities

We came across a great resource from Safe Place concerning abuse, including sexual abuse, and children with a myriad of disabilities, including neurodevelopmental (ASD,ADHD, intellectual disability), physical and sensory (blindness, deafness), brain injury, and mental health disabilities. This guide poses many questions about communicating and interacting with children with disabilities who may suffer from abuse or neglect. It also offers many suggestions to caregivers, family members, and educators about how to understand specific disabilities in the context of abuse.

You can find the guide here.

Tools for Teaching Gender Identity

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.*

genderbread person

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 romanticallygendery 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.

Interview with Kelli Martin, Human Sexuality Educator

clips from the interview.

Here at The Birds and The Bees, we love getting to work with other Champaign-Urbana community members. The Developmental Services Center in Champaign is a great resource for children and adults with developmental disabilities. We’ve done an interview with Kelli Martin, member of DSC’s Sexual Resource Committee, who teaches human sexuality to adults with developmental disabilities.

Would you provide a short bio of your experience as a human sexuality educator? 

I have worked at Developmental Services Center for 14 years and part of my responsibilities here includes being a member of our Sexuality Resource Committee. I have been a member of this team for almost 5 years. At DSC I provide education to our adult individuals, typically on a 1:1 basis. Topics taught have included basic body part identification and function, information on STIs and prevention, public vs. private, how to ask someone out on a date, male/female roles, navigating online dating, and everything in between. Prior to working at DSC I worked as an occupational therapy assistant in a variety of settings. Sometimes aspects of my job would include educating a patient on sexuality/body image/relationships after a physical injury in particular with young adults who had experienced traumatic brain or spinal cord injuries.

What is the most common misconception about sexual education that you encounter?

That we only teach people about having sexual intercourse.

What is one of your favorite topics to teach and why?

One of my favorite topics to teach has been about power in relationships. The conversation or session might start out about some sort of intimate/dating relationship and how power works, looks, feels in that sense, but then the points learned can be used in so many other relationship types. Many people, especially if they have a developmental disability have never had any control over their own life or felt that it was ok to make choices. It is very empowering to teach and a wonderful thing to witness when it finally clicks with the participant.

What do you find most difficult about teaching human sexuality?

I find the most challenging thing is to make sure that I don’t impose any of my own beliefs or biases into the session. I want to present objective information and then let the person make up their own mind about how that applies to them.

Could you give an example of what your teaching looks like (eg. how you have adapted existing material, an activity you like to use, how you have explained a specific concept)?

My teaching looks different from one participant to the next depending on their needs, but I like to use a lot of visual materials and I prefer to work 1:1. Pictures work well, but I like finding movies or YouTube clips that can emphasize or give a real representation of the point we are discussing. This was particularly helpful one session when the participant and I were discussing sexual harassment. He needed to see an example outside of himself to really understand what he was doing to others without realizing he was doing it.

What do you think is the greatest issue facing individuals with intellectual and developmental disabilities regarding human sexuality?

I think the greatest issue continues to be that those without a disability still have the perception that people with intellectual and developmental disabilities are not able to understand, make decisions, or express themselves. The individuals are then limited by what the support people in their life think is best for them which rarely includes anything about sexuality, relationships, or asking them for their opinion about their own life.

In your teaching, how do you increase awareness about rape culture and sexual assault?

I am part of a statewide project called “Illinois Imagines”. Our local collaborative is made up of disability service providers, the rape crisis center and DHS. We work to improve services to women with disabilities who have been survivors of sexual violence. There is a tool kit which includes many activities and lesson plans for women with disabilities to learn more about speaking up for their right to say “No” against violence and also their right to say “Yes” to healthy relationships and expression of their own sexuality. Our local team has also put on a couple of workshops for disability and mental health service providers, emergency personnel, and hospital staff in how to assist someone with a disability who is in crisis from a sexual assault.

To learn more about the Developmental Services Center or Illinois Imagines, please visit their websites.

You can download some information on Kelli here.

YouTube Educational Resources: Healthchannel, Sexplanations, and CSPH

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.

 

Thinking About Starting Your Own Online Program?

online family life educationI 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.

Communicating About Sexuality Adaptively

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It can be a little overwhelming to start thinking about communicating pictorially about human sexuality topics, but there are some supports available.

Many of you already use Board Maker (computer software that helps make visual supports and PECS).  They have a “Communicating About Sexuality” add on that is very useful and only costs $15.00 (but you have to already have Board Maker).

If you would like some guidelines on how to approach augmentative and alternative communication (AAC) in regards to sexuality Speak Up has resources that you may find useful.  Speak Up is a group dedicated to preventing sexual abuse/victimization among people who use alternative communication.  They have guidelines, suggestions for communication displays, and information about building sexual vocabulary.  This group surveyed individuals who use AAC and found that ACC users say they need:

  • People who recognize that they are sexual
  • Information about sexuality
  • Vocabulary to communicate about sexuality
  • People to communicate with about sexuality
  • Accessible resources and services

Sounds pretty darn reasonable to me.

 

Human Sexuality and Disability

asdsexed840Individuals 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

Tools for Teaching Human Sexuality

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

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.”

Dave Hingsburger- Blogger, Advocate, Educator

For those you how enjoy following blogs, and especially for those of you who enjoy blogs that feature individuals with disabilities, and particularly if you would like to read more about disability and sexuality- this blog is for you.

Dave Hingsburger is behind many of the resources from Diverse City Press such as Handmade Love/Finger Tips (masturbation education), No How (abuse prevention), and Undercover Dick (condom use).  He also has written several books such as The Key (supporting individuals with disabilities who are also sexual offenders), R: The R Word (bullying self-advocacy), and Just Say Know (victimization).  This is not an exhaustive list, but it gives you an idea.

Enjoy!