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.
Making decisions about dating can be tough, especially if you don’t really know what types of decisions to make. This graphic can be used to help steer the conversation about dating and how to make healthy decisions. It is available for download here.
Rewire News Group is a news website that is focused on sexual health and social justice. They are looking to “reshape the national dialogue on all things sex by making it more inclusive, positive, and centered on social justice.” The website itself is not focused on intellectual disabilities, however, they do offer some amazing articles about issues in the disability community.
Elevatus offers a variety trainings staff, direct support professionals, educators, self-advocates and parents to teach sexuality education to children and adults with developmental disabilities. In addition to their trainings, Elevatus has a sex education curriculum that can be purchased.
Here are examples of some of their trainings and the costs:
For Staff and Professionals – Developmental Disabilities and Sexuality 101 ($397)
For Parents/Guardians – Talking With Your Kids: Developmental Disability and Sexuality ($47)
In-service/live workshops and a 3-Day Certificate Training ($725) for anyone who wants to lead sexuality education classes with people with developmental disabilities.
The Friendships & Dating Program (FDP) offers inclusive teaching plans for individuals with intellectual and developmental disabilities. A unique aspect of this program is its emphasis on preventing interpersonal violence. There is a version of this program for youth with serious emotional disturbance. The FDP focuses on skill development through experimental learning and group activities with an interactive 10-week curricular plan. Interested groups can purchase the curriculum on its own ($600) or purchase the curriculum in combination with a train the trainer support provided live online ($1,800). You can find more information about the FDP from the below link. Some module illustrations are available on the website.
These days, it is hard to find an age appropriate content about sex, dating and abuse. Children have questions about their bodies, gender and reproduction. Teenagers worry if their bodies are developing normally or not while older adolescents struggle with peer pressure, changing relationships and emerging sexual feelings. AMAZE is an amazing website for parents and educators which helps them to expose their child to age appropriate content about sex through short videos. The website provides an insight to young people to successfully understand puberty, healthy body image, distinguish between healthy and unhealthy relationships, concepts of consent and mutual respect. Video topics are designed to meet the learning objectives outlined in the National Sexuality Education Standards.
Parents are the primary sexual educators of their children. By answering children’s questions, a parent let them know that you are “askable” and establishes an open line of communication that will serve you and your children well as they mature into sexually healthy young adults.
AMAZE also has resources for younger children like the parents’ playlist from amaze jr. It is designed to help parents become comfortable and confident talking to their children openly and honestly at any age.
This video will help parents to know when to talk about sexuality with their kids.
Do you think so playing “doctor – doctor” is safe or not? Check this video out which helps you to communicate your thinking and others about this game.
This video will model to the adolescents with disabilities to learn about manage their relationships with person they like or have attractions. This video guide them to deal with peer pressure and make healthy relationship.
This video helps your child to understand their body parts, difference between a male and female, and similarities between boy and girl.
Raising an individual with a disability presents a different set of obstacles then an abled individual may, but one topic that all parents must address is sexuality. Individuals with disabilities are sexual beings and therefore deserve an education on sexuality. While parents may acknowledge this need, finding resources and strategies to present the information may be more difficult if you are raising an individual who requires a different method of learning.
The Sexuality Resource Center for Parents provides a well rounded variety of information pertaining to sexuality. The website includes a section of information labeled “for all parents” that contains subjects they believe are useful for all children. In addition, they provide sections titles “For parents of children of typical development”, “For parents of children with developmental disabilities”, and “For parents of children with physical disabilities”. In each section, you can find a variety of information such as basics, specifics, activities, and additional resources. They also include tip guides!
The Sexuality Resource Center for Parents works to provide a better, comprehensive information base for parents to use when addressing sexuality to their child. The variety of knowledge is extremely useful when trying to find information to meet your child’s specific needs. In their own words, their mission statement claims “It’s time to acknowledge that children with developmental disabilities will become adults with sexual feelings, and as such, we must provide them with the information and skills they’ll need to become sexually healthy adults.“
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 Disabilityalso 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.
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.
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.