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.
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.
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
Teaching human sexuality is about formal lessons, selecting information, and choosing how to teach it, but it’s more than that. To be a sexuality educator you have to see the whole person and be committed to support that person. It’s not easy, it won’t be prefect, and you might make mistakes. But it’s not impossible either and you have lots of tools.
To me, it’s about asking “why not?”. Why not teach someone about different sexual positions? Why not incorporate questions about sexual life into annual planning meetings? Why not teach someone how to ask someone else on a date? Why not affirm someone when they are expressing their sexuality? Sometimes there are good answers to these questions but a lot of times there just aren’t. Being a sexuality educator is about being an advocate. It’s about giving people information in an engaging way they can digest. It’s about teaching skills and changing patterns of behavior. It’s about sending the message that there is nothing fundamentally wrong with who you are. I really appreciate people taking time to read this blog because I think the work you do is really important. Thank you!
Songs for Your Body is a curriculum comprised of, you guessed it, songs. They cover hygiene, abuse, masturbation, contraception, sexually transmitted infections, and sexual health. You can preview the songs on their website- I liked the masturbation songs. In general, they’re a little hokey but I think it’s a good example of thinking outside the box. The CD is $15.41 including shipping and handling and comes with a booklet of lyrics and activities.
This online store features 33 dvd based resources for teaching human sexuality to individuals with intellectual disability. They have resources for…
- All age ranges
- Boys and girls
Prices range from $35.00 to $250.00 with everything in between. This could be a great place to find what you need.
For those you how enjoy following blogs, and especially for those of you who enjoy blogs that feature individuals with disabilities, and particularly if you would like to read more about disability and sexuality- this blog is for you.
Dave Hingsburger is behind many of the resources from Diverse City Press such as Handmade Love/Finger Tips (masturbation education), No How (abuse prevention), and Undercover Dick (condom use). He also has written several books such as The Key (supporting individuals with disabilities who are also sexual offenders), R: The R Word (bullying self-advocacy), and Just Say Know (victimization). This is not an exhaustive list, but it gives you an idea.
This series of parent news letters is available in English and Spanish. They provide guidelines for families in regards to talking about sexuality topics. They are not adapted for children with special needs, but I thought they could be useful regardless (especially the more general issues). On this page the also have a fact sheet (English only) that has a lot of data about teens sexual behavior. There is very little (almost no) information about the sexual behavior of adolescents or adults with developmental disabilities but I’ve summarized the research that is available below. (You would need access to an academic library to read the full articles cited below for free). Despite the limited research, most people (be they parents or professionals) come to my workshop because they already know people with disabilities have sexual intersts!
There have been several studies that suggest that individuals with ASD have a desire for intimate relationships (Henault & Attwood, 2002; Van Bourgondien, Reichle, & Palmer, 1997; Ousley & Mesibov, 1991). These studies may define “interest” as instances of sexual behavior. For example, one study that reports the majority of 89 individuals with ASD living in group homes in North Carolina displayed some sort of sexual behavior (Van Bourgondien, Reichle, & Palmer, 1997). Other studies define “interest” as self-reports of sexual activity and knowledge (Ousley & Mesibov, 1991). In both cases they are reacting to earlier studies that reported that individuals with ASD (and other disabilities) had no interest for intimate relationships with others (Despert,1971; Rumsey, Rapoport, Sceery,1985) and common myths that report individuals with ASD to be asexual (Irvine, 2005).
Despite the trend to move toward a more accepting view of sexual interest among individuals with ASD and other developmental disabilities, there remain questions as to what extent individuals with disabilities are interested in sexual activity. For example, most studies look at sexual behavior however individuals may be interested in intimate relationships even if they are not displaying sexual behavior. Some studies have shown that individuals with more knowledge are less likely to want to engage in sexual activity (Konstantareas & Lunsky,1997); however it seems that the relationship between access to sexuality education and the desire for support with relationship development remains unclear.
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!
ABC just did an article about teaching human sexuality to students with intellectual disability. They focus on a New York school that has incorporated teaching sexuality into their mission. One of my favorite lines from the article is that “Sex ed is not a goal, but a process.” They mention in the article that New York City schools mandate sexuality education and I just wanted to comment on this, based on my experience in Illinois.
Although there is not specific information that addresses the willingness of school administrations to offer comprehensive sexuality education to individuals with ASD, there is information available for offering this type of education in general. As part of the Affordable Health Care Act federal funding was opened up for comprehensive sexuality education called PREP- Personal Responsibility Education Program as well as Title V- abstinence only education meaning that states get to choose the type of sexuality education offered and may offer both (SIECUS, n.d.). For fiscal year 2010, 43 states applied for PREP funding which means their sexuality education must cover abstinence, contraception use, healthy relationships, adolescent development, finical responsibility, educational and career success, and healthy life. Until PREP funding was aproved funding was only available for Title V abstinence only education.
Even if comprehensive sexuality education is being offered in the schools, that does not mean it is being offered to individuals with disabilities. Under the Individuals with Disabilities Education Act, students with Individual Education Plans have access to adapted general education curriculum. At this point, my understanding is that, in Illinois this means a student can participate in a general education sexuality class room unsupported, with an aide, or opt out. If the student (or more accurately, the student’s guardian), opts out, then the child’s special educator is required to adapt the curriculum with parental permission. There are no standards for what that adaptation must cover. Teachers may be working with professionally developed curriculum for individuals with disabilities, independently adapting a general education curriculum, or may be creating their own curriculum from scratch. Due to the diverse needs and strengths among individuals with students with disabilities there may be great variability in how long it takes to cover various topics, to what depth topics can be covered, and what further adaptations may be needed.
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
When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.
I’m going to present a model for one approach for implementing sexuality education at the agency level. This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.
Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.
Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.
Phase III: Invest in curriculum and teaching materials- you don’t need much to start out with, but I think it’s helpful to have something and you can always add later. Having said that, I’ve never come across anything that didn’t need some adaptation.
Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education? Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)? What will your process be for getting individuals receiving services involved? (I’ve attached a sample Referral Form).
Phase V: Start Implementing!
Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.
You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”. Here are some questions to ask yourself in regards to what you can do at a personal level.
- Where could I fit in with what my agency is already doing?
- How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
- How can I incorporate human sexuality concepts into programing?
- What can I do to advocate for human sexuality education?