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.
The Autism-Friendly Guide to Periods is a comprehensive guide for people ages 9-16. This book covers the basics of menstruation and offers direct advice on what exactly to expect when you start your period. On top of this, it provides advice for everyone, not just the person menstruating. This book offers advice to the parents or caregivers, and alleviates some anxiety that people face when asking for help. This book was created in consultation with young people and doctors, so it’s a great resource.
The author of The Autism-Friendly Guide to Periods, Robyn Steward, is Autistic herself, and made this book accessible and as inclusive as possible. This book is written in plain language, is straightforward, and suits the needs of Autistic individuals. The book offers step-by-step photos and instructions on how to change pads/tampons, and discusses alternatives to those. She also highlights what may be sensory issues for autistic people.
It’s extremely important for Autistic individuals (and those around them) to have a plan for handling menstruation. Someone’s first period can be a stressful, painful, and anxiety-inducing experience. Stress can be planned for an alleviated with careful education and preparation. This book is a fantastic resource and a great way to open up conversation about periods. For more information on planning for menstruation, check here: https://asdsexed.org/2012/06/08/menstruation-plan-26/
The Organization for Autism Research (OAR) was founded by parents and grandparents. OAR strives to use science to address social, educational, and treatment concerns in the Autism community. Their mission is to fund research, provide useful information and resources to the community, as well as hold programs to improve quality of life for individuals with Autism.
The OAR has put together an online guide for sexuality and sex ed. This guide is self-paced and intended for people on the Autism Spectrum aged 15 and older. This guide consists of nine modules: Public vs Private, Puberty, Healthy Relationships, Consent, Dating 101, Sexual Orientation/Gender Identity, Am I Ready?, Sexual Activity, Online Relationships and Safety. Each module consists of a video overview and 10-15 smaller sections.
This guide is completely free and can be accessed at the link below:
While the mainstream is becoming increasingly aware and accepting of disabilities, there is still a lack of representation. People with both physical and intellectual disabilities rarely ever see people like them in books, movies, on TV, or in many other forms of entertainment. On top of this, resources regarding sexual health, relationships, and puberty for disabled individuals practically don’t exist.
Woodbine House is a publishing company that specializes in informational books for individuals with intellectual disabilities. They have many books aimed at all different age groups that provide information on an array of topics pertaining to disabilities. On their website, they have different sections for Down Syndrome, Autism, and ADHD/ADD. Some of their sexual health based books include: Teaching Children With Down Syndrome About Their Bodies, Boundaries and Sexuality, Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities, and A Boys/Girls Guide to Growing Up. These books help teach people to identify body parts, how to identify/express emotions, personal hygiene, dealing with puberty, relationship safety and many other things.
Every one of their books features people with the disability they’re discussing, and they provide accurate and accessible books for all ages. These books are non-clinical and easy to read, and they are intended for everyday use. On top of this, they’re extremely accessible and informational. This company consistently provides parents and children with informational books that are practical, empathetic and empowering, and they push disabled issues into the public eye. It is a great example of increasing representation and inclusivity in media!
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.
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.
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.