It is difficult to determine the exact risk of sexual abuse for individuals with ASD. For one thing, reports of sexual abuse in the general population can vary widely. The first national survey reports victimization rates of 27% for women and 16% of men (Finkelhor et al., 1990)*- and many studies seem to report findings similar to this. A study has shown that children with disabilities are 1.7 times more likely to experience sexual abuse (Crosse, Kaye & Ratnofsky, 1993)*. In this study all children with disabilities were examined, not just individuals with ASD . Individuals who are caregiver dependent may be at the highest risk as 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.
So what can you so? Here are 5 places to start.
- Have a clear reporting procedure of any suspected incidences of abuse or neglect and use it!
- Don’t hug, kiss, hold hands, snuggle or in other ways compromise professional boundaries. Not only does this potentially mask dangerous “grooming” by sexual predators, it also communicates that individuals with disabilities are asexual.
- Sexuality education 🙂 may provide opportunities to for individuals to be better able to communicate and better understand social norms and activities thus giving them tools to better understand if abuse may be taking place.
- Teach folks to say no! When we don’t provide structured opportunities for people to say no, then when they need to they don’t know how.
- Don’t let sex be a taboo. If everyone is afraid to talk about it, they will be afraid when there is a problem also. Also, perpetrators will be deterred by the open communication.
The Department of Human Services in Illinois is targeting ending violence against women with disabilities. Click here to learn more!
*Link takes you to an abstract of the original article.
The Stanford Intellectual and Developmental Disabilities Law and Policy Project released a report focused on the Capacity to Consent to Sexual Activity among Those with Developmental Disabilities (link takes you to the page where you can freely download the report). The report provides historical background, the current state of the field, and capacity definitions. There are no federal statutes defining sexual assault and consent – each state has its own statutes. The report highlights six standards for consent used in various states: morality, nature and the consequences, totality of the circumstances, nature of the conduct, judgement, and evidence of disability. The Rape, Abuse & Incest National Network (RAINN) provides easy access to the laws in each state (link takes you to their state law finder). As wording in state statutes can be vague, judicial decisions help provide guidance for interpreting the statutes. The report from Stanford Intellectual and Developmental Disabilities Law and Policy Project provides summaries of judicial decision for each state. This report is an important tool for both victim rights and sexual autonomy advocates.
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.
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.
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/
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.
*We sent home a workbook with follow up/supplemental material during this lesson. The workbook is available on the post.
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.