Sexual Education is known to be a vital part of education that many people with disabilities do not receive. The National Council on Independent Living (NCIL) developed an excellent series of youtube videos aimed to help close this gap. The sex ed for individuals with I/DD project is a 10 part video series that can be seen on youtube. The project contains videos that discuss a range of important sexual information from healthy relationships and consent to how to use a condom. The videos also contain self advocates. Understanding that individuals with disabilities are sexual beings and informing such individuals on all sexual topics is extremely important. The NCIL’s video series is an amazing resource. Linked below is the introduction video to the series. The videos can also be accessed though the Nation Council on Independent Living youtube channel.
In a world of increasing accessibility, more and more clothing brands have begun producing products with accessible modifications. Unfortunately, undergarments and lingerie are important categories often forgotten. Individuals with disabilities are sexual beings and have the right to feel confident in their own bodies just as able-bodied individuals, and accessible underwear is a major factor in this.
In order to shine a light on these hidden categories, it is important to understand what accessible undergarments aim to do. Accessible underwear provides clothing that can be used by individuals with disabilities; Understanding that not everyone can use common closures or typical underwear styles. Accessible lingerie is also a growing category.
Slick Chicks, a growing adaptive underwear business, is a prime example of a company combatting this issue and empowering individuals with disabilities. The company sells a variety of accessible underwear and includes many images and videos to show just how easy it is to use their garments. They are specialized for women who may be in wheelchairs or have limited mobility but can be used to improve the accessibility of underwear for many individuals.
Another excellent resource is Devovere, an Etsy shop, aiming to provide lingerie that is made for you. Through custom orders an individual can request front-facing closures or adjusters, velcro closings rather than clips or buttons, extra fastenings, and more for no extra price. The owner of the company identifies as disabled and has set out to make inclusive clothing.
The Association of University Centers on Disabilities has created an incredible resource for self-advocates to gain sexual information and advice through a webinar series. The first episode of Sex Talk for Self-Advocates contains a panel of sexual educators answering questions about relationships and sexuality posed by self-advocates. Important questions such as “How do you know if someone is your boyfriend or girlfriend? What exactly does consent mean? How to be gay?” are discussed. The webinar series can be accessed through the AUCD website, linked below, or by going to AUCD network’s youtube channel. The presentation slides containing information from the video can also be found on the AUCD website. Sex Talk for Self Advocates is a great free resource that contains informed speakers and spreads sexual education to a diverse group of individuals.
Sexuality and Disability is a free blog dedicated to providing a resource for women with disabilities. The blog answers questions pertaining to sex, the body, relationships, and more in a safe and open discussion. The welcome statement of the website encompasses this;
“Our site starts with the premise that people with disabilities are sexual beings – just like anyone else. sexualityanddisability.org is constructed as a bunch of questions a woman with a disability might have – about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, about unvoiced fears or experiences of encountering abuse in some form.”
Sexuality and Disability also includes an award-winning section that appeals to many individuals with disabilities that contains stories from the point of view of an individual with a disability and gives an in depth and realistic view on sexual topics.
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.
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.
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.
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:
Know the law and regulations in the jurisdictions of your practice.
Know the bounds of your decision-making authority within your professional standards and ethics.
Know the extent and/or limitations of your decision-making authority imposed by the court.
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:
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…
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.
A 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.
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
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.
This 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.
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.
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.
This 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: https://vkc.mc.vanderbilt.edu/HealthyBodies/
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.