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.
Here are some resources about sexual violence, including crisis hotline information:
Sexual Violence and Disabilities Resources:
Sexual Abuse of Children with Autism: Factors that Increase Risk and Interfere with Recognition of Abuse: A free-to-access report on sexual abuse and children with ASD.
People with Intellectual Disabilities and Sexual Violence: A brief report on signs of sexual violence involving people with intellectual disability.
Guardianship, Sexual Assault, and Rape Kit Rights: A previous post of ours which highlights policy changes involving issues with guardians, sexual assault, and the right to release a rape kit.
Promoting Justice: An Essential Resource Guide for Responding to Abuse Against Children with Disabilities: This guide discusses abuse and neglect toward children with many types of disabilities, including neurodevelopmental, physical, sensory, brain injury, and mental health disabilities.
General Sexual Violence Resources:
Rape, Abuse, and Incest National Network: General resource about rape, abuse, and incest. There’s a lot of information, but not all of it is specific to people with intellectual disability.
The National Child Traumatic Stress Network: Parenting resources on sexual abuse in English and Spanish.
The National Domestic Violence Hotline: A great resource on domestic violence and abuse issues, along with contact information for hotlines and other related services.
You Are in Charge of Your Body: A video series aimed at young children to identify and understand sexual abuse and how to communicate these incidents to adults. It also teaches children to take charge of their bodies.
Sexual violence comes in many forms and it can be difficult to distinguish them. Here’s a basic guide on how to classify types of sexual violence.
Sexual Harassment: Giving someone unwanted sexual attention. This can include touching someone’s body without their explicit permission, asking for sexual acts, and catcalling, which is an unwelcome, sexually charged comment.
Rape: Forced vaginal, anal, or oral sexual intercourse. Rape lacks clear consent. Rape can occur by strangers or people you know, even a partner. Sometimes, power is used to coerce a person into sexual intercourse. In these case, usually a person declines sexual advances and is then guilted into intercourse.
Statutory Rape: Sexual intercourse with a person who is a minor or not at the age of consent (which varies by state and country). Get more information on statutory rape and the age of consent here.
Incest: Sexual acts between people who are related. This can be siblings, parent-child, uncles/aunts and nephews/nieces.
Domestic Violence: Violence between two people in an intimate partnership. This includes threats and acts of violence (i.e. battery).
Stalking: When a person repeatedly follows, watches, or harasses someone for a long period of time. This can include excessive phone calls (i.e. five phone calls in one hours) and giving gifts.
So, how can we prevent sexual violence and protect ourselves and others against it?
Understanding sexual violence: By understanding the types of sexual violence, it can be easier to identify and understand how it can affect yourself and others.
Speak out if something doesn’t feel right: If you are feeling that you have been part of a sexual act that did not make you feel good or that you did not want to do, telling someone you trust or contacting a sexual assault survivor’s line can help clarify the situation.
Teach consent as a mandatory step in all sexual situations: Consent is a fancy way of saying “yes, I would like this to happen.” By giving consent, you are allowing another person to touch your body. You can tell them what you are and are not comfortable with (i.e. “I do not want to do vaginal sex, only oral”). Understanding that consent can change at anytime during the interaction is also important and can be overlooked. It’s okay to say “stop, I don’t want to have sex anymore.”
Here’s a quick video about consent, including examples of what consent looks like.
An easy ready guide about abuse and neglect was forwarded along to me (thank you, Jennifer). I think most agencies have adapted abuse and neglect information readily accessible to the individuals they serve and comparatively, I thought this one was nicely done. It’s made with a product called Symbols for Life. Essentially, it’s a picture package featuring individuals with developmental disabilities. One copy is $298.00 and then additional copies are discounted. A lot of times, I like to make things with pictures of the individual I’m working with, but there are times when that is inappropriate/unfeasible. I think this could be a good source for those occasions.
Here’s the Say NO to Abuse pdf if you want to check it out.
I wanted to put you in touch with a website called “Living Well with Autism“. They have several Board Maker Social Stories related to privacy.
While I think overall this site has some nice ideas, I’d be careful about using “Good Touch Bad Touch”. Good/Bad may bring up feelings of guilt, could be over generalized, and might be confusing as an assault often starts with touches that feel good then moves to touches that feel bad. Also, there are some studies that have shown that children understand the word touch differently than adults. For example they wouldn’t categorize people kissing as touching, because well, they’re kissing. I think this could be a problem for someone with an intellectual disability that doesn’t categorize well. I like the terms safe and unsafe touch. I also like saying touching makes you feel something. If a touch feels good, it’s probably safe. If a touch doesn’t feel good it’s probably not safe. Then you can teach specific kinds of touches. Having said that, the site gives you some good Social Stories to start with. Pictured left is part of one of their stories.
Just another note on language. There is a movement among abuse prevention advocates to alter some our terminology when talking about sexual abuse prevention. I mention in my workshop that we have to be careful when talking about using education to help prevent sexual abuse because it implies that the individual is responsible for reducing his or her own risk. Alternative terminology includes personal safety skills, abuse-response skills, or self-protection skills.
I’m just going to be honest. I think sex shops can be a little creepy. It really pushes my comfort zone to support someone purchasing sex toys not because I’m uncomfortable with the individual I’m working with’s sexual expression- I’m uncomfortable the sexual of expression of general patrons of the store. Usually the line between sexual exploitation and sexual affirmation is a nice, clear, thick, black line. But in a sex store it’s gets blurrier and it can be difficult to navigate. It pushes me to think about my own biases, but at the same time I don’t think all sex shops affirm sexuality equally.
That’s part of the reason I was so glad to stumble upon “Come As You Are”. The other reason is because they actually know things about serving people with disabilities. “Come As You Are” is a sex shop located in Canada (great for Torantoins, but less than great for Illinoisians). They have a wonderful website, are knowledgeable about people with all different abilities, and are responsive to questions. If you know of place that is safe and accessible or at least responsive to the needs of individuals with disabilities, please share.
The store was featured in this video which I found to be very enlightening in regards to things to consider when supporting someone with purchasing a sex toy. For one, I wasn’t really aware of some of the options out there. The video also goes into several was to match ability needs with sex toy functioning. I will warn you that streaming quality is not that great, but the content is excellent.
Another thing to think about is the use of wedges and ramps for sexual exploration and sexual expression. The Liberator is probably the most popular line of sexual furniture. They look just like the wedges used in the exercise room of our day program (except the ads all have beautiful scantily clad women on them). Using tools for sexual positioning may be the only way some individuals can participate in intercourse or other sexual activities. The how to use videos on their website are more erotic than instructional. There are videos online geared toward instruction. They are explicit, but the participants are fully clothed throughout. Click here for the male positioning and here for female positioning.
Individuals with physical, cognitive, or emotional disabilities have a right to education about sexuality, sexual health care, and opportunities for socializing and sexual expression. Healthcare workers and other caregivers must receive comprehensive sexuality education, as well as training in understanding and supporting sexual development, behavior, and related healthcare for individuals with disabilities. The policies and procedures of social agencies and healthcare delivery systems should ensure that services and benefits are provided to all persons without discrimination because of disability.
Human sexuality encompasses the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals. Its various dimensions involve the anatomy, physiology, and biochemistry of the sexual response system; identity, orientation, roles, and personality; and thoughts, feelings, and relationships. Sexuality is influenced by ethical, spiritual, cultural, and moral concerns. All persons are sexual, in the broadest sense of the word.
From Sexuality Information & Education Council of the US, www.siecus.org
I know many of you are interested in writing a sexuality policy for your agency to help guide decisions around teaching human sexuality. Here is an example I thought might be helpful from Florida’s disability council.
What I really like about this policy is that they organized it around student responsibilities and educator responsibilities. I think this is a nice model for conceptualizing a sexuality policy. Below, I’ve highlighted the “Quick Reference Fact Sheet on Choice and Education Instruction” which is part of the policy.
A lot of the curriculum we used for the puberty unit of our Human Sexuality 101 group was adapted from “Teaching Sexual Health“. They are a group out of Canada that provides support for teachers and parents. I used their general curriculum but they also have a curriculum for students of differing ability levels. They have great resources for parents including “webisodes” that give examples of parents talking to kids about sexuality topics. The website is very well organized and easy to use!
Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.
They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material. I’ve also included links to the slides- this is a direct link, you don’t need to register.
Slides: “Sex is when people use their bodies together to share love and pleasure.”
Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”
And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet- “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”
In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships. These include general information as well as parent tips.
I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.
I just wanted to link to one other power point presentation that I thought had a lot of good information. “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School
During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth. Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.” But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender. This topic also raises issues related to guardianship and self determination. Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with. For people with disabilities, who gets to make that choice?
Could having a developmental disability lead to difficulties with gender identity?
This is a little difficult to answer. There are very few studies ask this question. In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect. However individuals with ASD may be tapped into to services which might account for this difference. When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.
Given how little is known, where can I go for more information?
There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.
Gender Spectrum is a great place to start looking for more information. This is a website that can link families with medical, mental health, social, and legal services. The have great definitions of all the different terminology and a great overview of gender development.
Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families. For me, it was really eye opening and helped me connect this topic to real people.
On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler. The story had almost 2,500 comments 5 days later. They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie. I got e-mails from confused parents who had their aha moment when they read Tyler’s story. And sure, I heard from the haters”. This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.
*This links to the abstract of the article. Unfortunately, the full text of the article is not available for free online.
Many of the teaching strategies that you use when teaching human sexuality you also use in many other contexts. Autism Internet Modules can help you learn teaching strategies like the ones listed below (currently they have 37 modules and they are always adding more). The modules give a really complete overview (they can be a little boring but overall they are very helpful). Some these may be a review but others may be something you have heard of but aren’t quite sure what it really is. What’s especially nice is often the expert who developed the technique is the one teaching the module. Just a little warning- you do have to set up a log in. Many of these interventions have been specifically developed for people with Autism Spectrum Disorders- but not all of them!
Antecedent-Based Interventions (ABI) – Differential Reinforcement – Extinction – Functional Communication Training – Language and Communication – Naturalistic Intervention – Overview of Social Skills Functioning and Programming – Parent-Implemented Intervention – Peer-Mediated Instruction and Intervention (PMII) – Picture Exchange Communication System (PECS) – Pivotal Response Training (PRT) – Preparing Individuals for Employment – Prompting – Reinforcement – Repetitive Patterns of Behavior, Interests, and Activities – Response Interruption/Redirection – Rules and Routines – Self-Management – Social Narratives – Social Skills Groups – Social Supports for Transition-Aged Individuals – The Incredible 5-Point Scale – Visual Supports
For those of you who attended the workshop, in the workbook starting on page 34 there is a table with examples of strategies. Some of the strategies come from Autism Internet Modules.
“A Thinking Person’s Guide to Autism” is a wonderful resource and online community. They have a blog, facebook page, and book so you can check them out in what ever way is most comfortable to you. Although they deal with many topics related to Autism Spectrum Disorders, they often touch on topics of sexuality.
I especially would recommend checking out this post, “Talking About Sex with Young Adults with Autism” Here’s an excerpt.
“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”
“Did Amy want to go in her room with you and shut the door?”
“Not really. So we went outside and the parents kept watching us.”
“Did Amy want to be alone with you outside?”
“I’m not sure.”
“Did you touch Amy?”
“I wanted to. I wanted her to lie down on the grass so we could do sex.”
“Have you ever had sex with anyone else?”