Talking About Sex: Sexuality Education for Learners with Disabilities

From the Publishers:

Key social and emotional milestones during adolescence are often directly related to the abilities to initiate and maintain intimate relationships, maintain physically maturing bodies, and manage personal sexuality. Most adolescents with developmental disabilities have particular difficulty expressing sexuality in satisfying ways, consequently facing issues such as limited intimate relationships, low self-esteem, increased social isolation, deregulated emotional maintenance, reduced sexual functioning, and limited sexual health.
Appropriate sexual knowledge assists not only in achieving personal fulfillment, but protection from mistreatment, abuse, unplanned pregnancies, or sexually transmitted diseases (STDs). It also works to help solve problems of loneliness and problems with self-esteem.
This book will address this but also much more. Issues of physical and cognitive development will be discussed, including appropriate sexual development/urges and brain development, and innate similarities and differences of sexuality that could occur between people with autism spectrum disorders and intellectual or developmental disabilities, including the complexities of physical disabilities. The authors will also consider special considerations for group homes and recreational facilities, and specifically focus on concepts of ethics and models of consent (medical, legal, social, and educational), as well as how to deal with uncertainty.

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.

 

Anatomical Puzzles for Children

Both Hape and Melissa & Doug have made anatomically correct body puzzles.

Hape sells boy and girl puzzles separately for around $20.00 each.  The children are pre-pubescent and European American.  The video below shows a child completing the puzzle. The toys are distributed by Hape but are actually made by a company called Beleduc out of Holland. Beleduc also has a great pregnant mother puzzle that is a little difficult to find.

Melissa & Doug make a magnetic human body play set that includes children of both genders for about 13.00.  The children are early adolescents and European American.

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.

Healthy Realationships and Autism

healthy relationships and autismA new curriculum called “Healthy Relationships and Autism” is now available from Wesley Spectrum (a behavioral health organization with several locations in the Pittsburgh, PA area). It was designed to teach skills to adolescents and young adults with Autism Spectrum Disorder or cognitive challenges in the areas of self care, sexuality, and relationship development.  Their website has an example lesson to help you determine if it would be right for your students.  They do not publish their pricing information (you have to email them for more information but they will send you a sample packet).

I have not used this curriculum but there is some evidence of it’s effectiveness.  A study published in School and Educational Psychology evaluated this program with six students.  These students showed increases in sexual knowledge which they retained one month after completing the class.

PEERS Program

The Program for the Education and Enrichment of Relational Skills (PEERS) was originally developed at UCLA by Dr. Elizabeth Laugeson, Founder and Director of the UCLA PEERS Clinic, and Dr. Fred Frankel in 2005 and has expanded to locations across the United States and the world. PEERS is a manualized, social skills training intervention for youth with social challenges.

There are four options for getting training in PEERS. (1) The PEERS Certified Training Seminar last two days and is hosted at UCLA.  It is designed specifically for mental health professionals and educators interested in learning and/or implementing the PEERS intervention into their clinical practice. (2) PEERS provides off-site training seminars, presentations or talks for a variety of agencies based on their specific needs.  These may range from 1-4 days, with varying costs. (3) The PEERS Certified School-based Training for Educators is designed exclusively for teachers, school psychologists, counselors, speech and language pathologists, administrators, and school-based professionals who are interested in learning to implement The PEERS Curriculum for School-based Professionals. Attendees will obtain 24 hours of training over 3 days and this training also takes place at UCLA. And (4) PEERS provides off-site School-based training seminars, presentations or talks for a variety of agencies based on their specific needs.  These may range from 1-4 days, with varying costs.

The PEERS program naturally lends itself to sex ed instruction.  For example, the adolescent program focuses on

  • How to use appropriate conversational skills
  • How to find common interests by trading information
  • How to appropriately use humor
  • How to enter and exit conversations between peers
  • How to be a good host during get-togethers
  • How to make phone calls to friends
  • How to choose appropriate friends
  • How to be a good sport
  • How to handle arguments and disagreements
  • How to change a bad reputation
  • How to handle rejection, teasing, and bullying
  • How to handle rumors and gossip

This video features a program that uses PEERS for sex ed

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.

Puberty and Adolescence Resource: A Guide for Parents

puberty_coverThis tool kit from ATN/AIR-P provides information on body changes; self-care and hygiene; public vs. private rules; staying safe: strangers, secrets and touch; elopement; safety planning for increased aggression; and Internet safety.

Some of my favorite features:

  • Link to underwear designed to keep menstrual pads in place (I had no idea this existed!)
  • They have parent stories throughout.
  • They have suggestions for how occupational therapy can provide support.

Sexual Safety Resource: Chicago Children’s Advocacy Center

Chicago Children’s Advocacy Center is a program for sexual abuse prevention and response to crisis. They have supports specifically for children with disabilities. They recommend creating a family safety plan, teaching children about sex and sexuality, learning about sexual development, taking to caregivers/program staff about issues of sexuality, and watching others’ behaviors.I like this resource because the focus in on prevention through increasing the viability of sexuality.

ccac-header-logo

The culture that makes it inappropriate to talk about healthy sex and sexuality creates a hidden space where dangerous sexual behavior can take place.  Whenever we’re talking about prevention, I think that it is important to highlight that children and often adults with developmental disabilities cannot prevent their own abuse. Adults and older children with more power and more control manipulate to create situations where they can abuse. Prevention looks like trying to eliminate those spaces and creating opportunities for reporting.  This agency seems to focus on that method and minimize language that blames the victim.

Here is a webinar which aired live on December 9th, 2015 on Safety & Autism: Helping caregivers and providers talk about sexual abuse and prevention.

The Healthy Bodies Toolkit

Healthy bodiesThis publication was developed and written by Vanderbilt Leadership Education in Neurodevelopmental Disabilities (LEND).  There is a boy version and girl version.  Each version has a booklet for parents or teachers and supplemental materials which include storyboards and visuals that you can use in implementing the methods outlined in the toolkit.  It is free and there is a Spanish version!

Here is the website: http://kc.vanderbilt.edu/healthybodies/index.html

Adult Human Sexuality Curriculum

These curricula materials are for educators working with young adults. It is a bit more in depth than the high school curriculum and discusses human sexuality in a broader sense.AdultHumanSexuality

Adult Human Sexuality Week 1: Welcome

In the first week of the adult human sexuality class, we focus on meeting the others in the class and establishing a level of respect and expectations for the class.

First, the group will create a list of rights and responsibilities.  We’ll start with a writing reflection of what participants think the rights and responsibilities should be.  As needed the facilitators will prompt important rights/responsibilities that should be included on the list including: to be heard, to ask any questions, to not be put down, to pass, to not have assumptions made about you, to have your own feelings, to say hello and good-bye to group members, to be present and confidentiality.  We will briefly discuss each right/responsibility.  These rights/responsibilities will be posted in each session.  The rights and responsibilities help establish safety and the tone of the sessions.  They serve as a guideline so participants know what is expected.

We will also create a question box and name cards and then there will be an ice breaker activity so the group gets the chance to learn about each other. Then, there will be a discussion about what human sexuality is and discuss the group’s thoughts of human sexuality.

Lesson 1 Materials

Human Sexuality Newsletter Week 1

Adult Sexuality week 1 Lesson Plan

Lesson 1 Worksheet

8 Week Middle School Human Sexuality Curriculum

Over the summer, I did a 8 week sexuality class with middle school students with autism (3 boys and 3 girls).  I’ve posted each lesson from the curriculum, but I thought I’d link all the posts together so you could get to them in one place.  For each session there is a lesson plan, parent letter, and power point slides.  Some lessons also have worksheets.  I’ve also commented about how the lessons went and some ideas for adaptation.  Click on the links below to go to the posts and access the materials.

Human Sexuality 101 topic

*We sent home a workbook with follow up/supplemental material during this lesson.  The workbook is available on the post.

High School Human Sexuality 101 Week 1: Welcome

This summer, at TAP in Urbana-Champaign, we are doing an eight week human sexuality group for middle school students.  We have three boys and three girls in our group who range in age throughout the middle school years (from starting 6th grade to finishing 8th grade).   Check out the slides that accompany the lesson.

Our first week was a blast.  You can check out the full curriculum here [Sex Ed week 1].  We used a worksheet to help the students come up with their own definition of human sexuality.  I love the definition we came up with as a group, “Sometimes human sexuality topics make us feel uncomfortable, but it’s a part of life, specifically, part of our private life.  Human sexuality is about how we feel about people like loving someone and liking someone, but sometimes two people’s feelings may not match with each other. Human sexuality has to do with emotions, the body, and relationships.”

We sent a letter home with parents that explained the activities with fairly significant detail, touched on next weeks activities, and provided additional resources.  One of the important parts of this letter was suggestions for ways to incorporate these topics at home.  This week, as it was mostly about introductions, the parent component focused on using the rights and responsibilities at home.

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.