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.
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/
While many people are familiar with pornography, it’s not always suited for everybody. Some people may become overstimulated, overwhelmed, or just downright uncomfortable when trying to enjoy an adult film. While there are some alternatives, like erotic scripts and stories, there is still an increasing amount of people looking for more options. An increasingly popular alternative is erotic audios, which are recordings of actors engaging in sexual activity.
PsstAudio is a website that is dedicated to erotic audios, scripts, and texts. This website allows users to listen to a library of audios, as well as upload their own. It’s easy to navigate, search, listen to and save audios, and it’s completely free to users. You must be over the age of 18 to create and account. The website’s homepage can be found here: https://psstaudio.com/
@LingerieLitClub is both a Twitter account and a Discord server that promotes erotic audios. They constantly post links to new audios, as well as hold events on their Discord server. They hold Intimate Poetry Nights, Q&A nights with audio performers and authors, as well as large group calls where you can speak to other people a part of the server. All of their events are completely free and the audios they post are accessible to everyone! Their links can be found below:
Erotic audios offer a new way for people with Intellectual disabilities to find sexual pleasure because they are a less stimulating alternative to pornography. These new options promote sexual health for everybody and have made pleasure more accessible!
While many other household items are changing and being developed more accessibly, any industries regarding sex often stay avoided. Sex is such a taboo topic in general, even more so in the disabled community. There are many rumors and assumptions made about sexuality in the disabled community, the most prevalent myth is that people with any type of disabilities don’t have sex or experience sexual pleasure. However, that’s not true. Sex is a basic human function, and everyone, regardless of ability, is entitled to it. Many times, sex toys are extremely inaccessible for people with physical and intellectual disabilities. Whether they’re not easy to physically work with, or they’re too stimulating, sex toys aren’t usually designed with all types of bodies in mind.
Come As You Are is an online business specializing in high-quality, ethically sourced, and affordable sex toys for all ability levels. This company has a wide variety of sex toys that are designed to work for people with all types of disabilities. When making their toys, they keep topics like mobility, privacy, fatigue, and many others in mind when creating sex toys. They are very transparent about how their toys are made, and they take suggestions about how to better improve their toys and make them more inclusive. They say, “It’s our experience that doesn’t come ‘naturally’ to everyone. We consider it our responsibility to do the hard work that makes it easier to explore.”
On top of this, their website has many articles and resources that talk about inclusivity in the sex industry. Their articles discuss choosing the right sex toy depending on your ability, information about condoms, and many other aspects of sexuality. They encourage embracing sexuality healthily, despite your skill level, and are pushing the sex industry in a more inclusive direction!
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.
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.
Anatomy and Reproduction were the topics for week 2. We started off the session with a game called “Parts and Post-it Notes” to talk about body parts with the participants. To play this game we had a giant piece of paper with the outline of a body on it. We gave the participants post-it notes to write down the body parts that they knew and asked them to place them on the outline of the body.
After this activity, the participants were told that for the rest of the class they would be focusing on body parts related to reproduction (another way to refer to sex organs or private parts). The participants were then directed to the next activity where they practiced saying terminology related to reproduction out loud and recording their responses to how saying the words made them feel.
When the participants finished the terminology activity, we spit them into two groups to start the fruit anatomical model of reproductive organs using fruit. The participants were shown a picture of the parts of the body and were giving tooth picks and flash cards to label the fruit parts and their functions. This activity was great for the participants to learn the vocabulary in a little abstract and safe way! For a more concrete example of reproduction, we used the “Miracle of Life” video to explain the process.
We ended this session by having the participants briefly summarize that they learned during the session.
YouTube has a lost of great sexuality education resources but it can be hard to find among all of the “not safe for work” content. Here’s a few channels and videos that might be useful. One of the most difficult tasks sex educators report is explaining intimate acts. This can be uncomfortable and difficult so I’ve tried to focus on these difficult to teach topics. The videos may not be the best fit for the person/people you’re working with, but they can give you an idea where to start. The channels also have great resources for expanding your own education on sexuality topics.
Healthchannel is a YouTube channel with short videos on a variety of health care issues including sexual health resources including a few I’ve listed below. The videos aren’t prefect. They don’t feature animations with people with disabilities and focus on heterosexual couples, but they give very precise, clear information.
Sexplanations is another YouTube channel. They have mini episodes on human sexuality topics from shared sexual behavior to STDs to anatomy. Again the videos aren’t perfect. They move a little too quickly than I would like, but I’ve selected a few I think could be helpful. They could also be good to expand your own understanding of various topics.
Many women with development disabilities are under anesthesia during pelvic exams or don’t get them at all (or as recommended). However, educating about pelvic exams may be an important part of teaching sexual health. I’ve included the link to a video that may help.
This is a brief video that goes through the basic procedure of a woman having a pelvic exam. This could also be a good video for teaching about female anatomy. It has a lot of technical terminology but it also moves nice and slow.
Hygiene is not on the SEICUS guidelines for what to teach in a human sexuality class, but we find that it can be a hard topic for students. It also is strongly connected to puberty because it is during puberty that hygiene needs change at the same time young people have more autonomy and responsibility for their hygiene. We tackled hygiene with a series of activities we called hygiene Olympics. In small groups, students moved throughout the stations to practice and contemplate hygiene tasks.
Hand washing: Students rubbed glitter mixed with lotion on their hands and then had to wash their hands until the glitter came off. This will helped students to recognize that hand washing is more than just rinsing hands lightly with water.
Body washing: We will had life-size body outlines, loofas, and paint. Students used the paint like it was soap. This helped students recognize the importance of washing their entire body.
Laundry: Students saw a pile of laundry. They then sorted the clean from the dirty clothing (the dirty clothing are just tee shirts that have been dampened and wrinkled). The helped students identify clean clothing.
Shaving: Students used an orange to practice shaving with a razor and shaving cream. The teacher in the group explained that boys often shave their face and that girls often shave their legs and underarms. Students had an opportunity to practice shaving.
Deodorant testing: We had several deodorants with the brands blocked out. Students smelled and voted on their favorite scent. At this station, teachers pointed out the importance of wearing deodorant each day and reapplying after activities that cause sweat. This station emphasized the importance of deodorant use.
My Hygiene Routine: Students saw pictures of different hygiene tasks. They also had a worksheet that said “My Hygiene Routine.” Students chose what order they would prefer to complete the hygiene tasks. This activity provided students with control and choice while also committing them to completing the necessary tasks.
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.