This is one of the most common questions regarding sexuality and disability…
If you are a guardian of an individual with a developmental disability what is your role and legal authority regarding decisions on sexual activity?
According to the National Guardianship Association:
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.
Guest Room is a short film Written & Directed by Joshua Tate and starring Lauren Potter (“Glee”) and Michael Iovine (lovelandfilm.com). It won the Audience Award (Competition Short) at SXSW 2015.
I think you are going to love this movie. It’s beautiful, emotional, and honest. I could easily see this being used in a human sexuality classroom to help discuss parenting, consent, and support from families. It follows the story of a young couple who are faced in a situation many young couples find themselves in, an unexpected pregnancy. Like many young couples, the response of their families is shock and disappointment and this makes it difficult to determine their own feelings, hopes, and wants.
There was one statistic that was mentioned in the film that I had not heard before. It said that a women with Down Syndrome has a 50% chance of having a child with Down Syndrome. I did a little digging to see if I could find out more and received some help from The Tech Geneticist a project from the University of Stanford which seeks to increase the public understanding of genetics. About half of the eggs of a women with Down Syndrome will have an extra 21st chromosome (similar to what is described in this post http://genetics.thetech.org/ask/ask296). Her actual chance of having a child with Down Syndrome is less than 50% because fetuses with extra 21st chromosomes are at increased risk of complications. According to the National Down Syndrome Society only about 50% of women with Down Syndrome are fertile (ovulate).
It’s trickier when it comes to thinking about the father. Much less is known about the heritability (chance of passing a genetic trait on) of Down Syndrome for men with Down Syndrome, but it may be that their sperm that carry two 21st chromosomes would be less viable than their sperm that only have one. Both the Tech Geneticist and the National Down Syndrome Society suggested men with Down Syndrome seem to have much lower fertility rates than their same age peers with two 21st chromosomes.
A new curriculum called “Healthy Relationships and Autism” is now available from Wesley Spectrum (a behavioral health organization with several locations in the Pittsburgh, PA area). It was designed to teach skills to adolescents and young adults with Autism Spectrum Disorder or cognitive challenges in the areas of self care, sexuality, and relationship development. Their website has an example lesson to help you determine if it would be right for your students. They do not publish their pricing information (you have to email them for more information but they will send you a sample packet).
I have not used this curriculum but there is some evidence of it’s effectiveness. A study published in School and Educational Psychology evaluated this program with six students. These students showed increases in sexual knowledge which they retained one month after completing the class.
The 1 hour and 13 minute movie, Autism in Love, is about falling in love, wanting to fall in love, the struggle of understanding love, and heartbreak. More than that, this movie is about what it means to be autistic, how love shapes identity, and the support of family. There are multiple viewing options but it is currently airing for free on Independent Lens. It follows the stories of four individuals on the autism spectrum as they navigate issues of love and relationships.
Here is a guide for using the film as a teaching tool: Autism in Love Viewing Guide
This movie is more geared toward adults as the youngest person featured in the film is in his early 20s and much of the film centers on marriage. If you were working with older teens, you may want to focus on Lenny.
Chicago Children’s Advocacy Center is a program for sexual abuse prevention and response to crisis. They have supports specifically for children with disabilities. They recommend creating a family safety plan, teaching children about sex and sexuality, learning about sexual development, taking to caregivers/program staff about issues of sexuality, and watching others’ behaviors.I like this resource because the focus in on prevention through increasing the viability of sexuality.
The culture that makes it inappropriate to talk about healthy sex and sexuality creates a hidden space where dangerous sexual behavior can take place. Whenever we’re talking about prevention, I think that it is important to highlight that children and often adults with developmental disabilities cannot prevent their own abuse. Adults and older children with more power and more control manipulate to create situations where they can abuse. Prevention looks like trying to eliminate those spaces and creating opportunities for reporting. This agency seems to focus on that method and minimize language that blames the victim.
Here is a webinar which aired live on December 9th, 2015 on Safety & Autism: Helping caregivers and providers talk about sexual abuse and prevention.
We came across a great resource from Safe Place concerning abuse, including sexual abuse, and children with a myriad of disabilities, including neurodevelopmental (ASD,ADHD, intellectual disability), physical and sensory (blindness, deafness), brain injury, and mental health disabilities. This guide poses many questions about communicating and interacting with children with disabilities who may suffer from abuse or neglect. It also offers many suggestions to caregivers, family members, and educators about how to understand specific disabilities in the context of abuse.
You can find the guide 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 lesson plan revolved around teaching what body image means, understanding that people feel differently about their bodies, and that people change how they feel about their bodies over time. After doing several knowledge based activities, we moved to exploring how the students felt about their own bodies.
There was one theme that was really relevant for the student we were working with. She was really interested in her perception of self and others perception of her. In her self-portrait, she focused on the things that make her her; most of these were things you couldn’t see.
We also read body stories. Each had a picture of a body. Just seeing the images was really moving. We were planning mostly for girls, but I included a story that might be more appropriate for a male audience. The young woman chose to read the story about the women who was the most traditionally beautiful (not really a big surprise). This was a story about a woman with chronic illness. Serendipitously, the body story resonated concepts that this student was working through.
Body Stories (all female) from This is Who I Am by Rosanne Olson (her website is http://bodyimagebook.com)
Body Story (male)
You’re probably sick of seeing my fruity anatomical models, but I just can’t help myself from teaching them- at least I gave you a different picture. I love that activity. One of the participants in the class has trained to be an EMT and is now working on becoming an nurses assistant so he was able to explain the reproductive processes and anatomy. On the other hand, other folks had a hard time looking at pictures of the developing fetus and seeing progression from cells to a more complex organism. I think there just wasn’t enough context and exposure to those images. All the participants in our class had this piece of sex ed before so they knew all the basic parts of anatomy. We got into a nice discussion about reproductive anatomy and why it’s private and why it’s taboo.
When talking about reproduction, be careful not to limit conception to just intercourse (although this is critical information too). In our activity we framed sperm entering the vagina as through intercourse or a medical procedure. You could go into more depth and talk about different fertility options. Why? First, intercourse is not the only birth story and specifically it’s less likely to be the birth story for children with gay or lesbian parents. I think it’s important not to assume that heterosexuality is the norm. Second, many individuals have difficulty conceiving and need fertility support. I think it’s important not to assume fertility is the norm.
For the supplemental materials my co-facilitator and I got into an interesting situation. The book she wanted to use was only available in the children’s section at the public library. It was a really nice resource, but we were concerned about sending adults to the children’s section. All the reproduction books with pictures were in the children’s not fiction section. In the end, we decided to include it, but put a warning where it was located. I’m not sure this was the best choice, but that’s what we went with at the time. We also encouraged participants to watch “Life’s Greatest Miracle”. This is a great teaching tool, and they could stream it for free!
I’ve attached the lesson plan and supplemental materials below.
The main activity this week was a series of worksheets designed around walking participants through the steps of having a crush: places to meet someone, why you notice someone, deciding to talk to them or not, signs of being interested, approaching someone, asking out on a date, and saying “No”. Probably the most difficult question on the worksheets was, “why do you notice this person?” Many of the participants focused on things the would like if they got to know someone. It took several prompts, but they were able to start thinking about the things they notice about others, the things that draw their attention. When we got to different ways to approach someone there were many questions on bar etiquette. We talked about buying drinks for others, when it’s expected to approach people and when it’s not, and the difference between the bar sitting area and table sitting area. We didn’t get to our final activity, but were were going to sequence the road map with pictures of couples at different stages. We have a little bit of a time management problem because there’s no clock in the room. It’s the little things!
We gave them two additional resources this week. First we sent them to a website on how to build self confidence. We also suggested the book, What Men With Asperger Syndrome Want to Know About Women, Dating and Relationships by Maxine Aston.
Get all the materials for this weeks lesson
The previous week focused on crushes so this week’s topic, dating, was a natural extension. We did a lot of role playing and it went wonderfully. We were able to pull out parts of the role play to reinforce many of the different concepts. The last time I had done role playing was with middle school students- adults are just so much different to work with. They took the role plays very seriously and put a lot of effort in. One of the actors did turn out to have a comedic streak so the activity was fun as well as thoughtful.
We also did an activity where we asked participants to think about the characteristics in a relationship that were most important to them. We had a couple red flags on the list (like one about physical mutuality) and they were all tuned into why that is important. This activity lead to a nice open discussion where we talked about other items on the list that were important to us. For the most part, people in the group are really centered on having similar interests and values.
Free free to use the materials we’ve developed.
Materials for this week
For those of you who have come to a workshop, this activity was similar to what we did in the workshop. We thought about power and control in relationships and specifically the benefits of having more power, benefits of having less power, drawbacks to having more power, and the drawbacks to having less power. Once we got it all up on the board we used put a circle in the center and talked about how different situations would be red flags that a relationship would be unsafe. We also did a shortened version of the “What Should I do Worksheet” and role played some of the different scenarios (like one friend calling another friend because her boyfriend just told her there was a greater age difference than she assumed).
We want more people to get good sexuality education so feel free to use our materials. If you improve on them, let me know!
This Weeks Materials
One of the participants in our group loves to do trainings and so we included a online training program to identity dating violence in teen relationships. You may find this site really useful too. Dating Maters offers a 1 hour and 20 minute training that will allow you to identify examples of teen dating violence and understand the consequences of teen dating violence. The training will teach you the risk factors, protective factors, warning signs, and challenges for seeking help for teen dating violence. The material is a good starting place for adult relationships too.
This activity was a little more difficult than we expected (I don’t know why I didn’t expect it to be hard- we’re talking about sexual activity after all!). It was hard for us to explain each of the sexual activities. Part of the point of this activity is to talk about the variety of sexual activities, but sometimes we get caught on our own hang ups and assumptions about what people need to know. On the other hand, this material was difficult and new for many of the participants in the group. Talking about sexual activities can make people feel uncomfortable. I think, in the end we struck a nice balance between expressing the diversity of sexual expression and having opportunities to set personal boundaries. I would make some revisions to the lesson plan and those revisions are reflected in the lesson.
We did a mini pretest which we revisited at the end. The bulk of our activity involved sorting sexual activities into categories and talking about the continuum of intimacy. The relationship categories really helped set up the continuum so I would recommend doing that step first (the relationship categories aren’t listed in order. I would do it from left to right- outside a relationship, in a casual relationship, in a serious relationship, only if married or in a lifelong partnership, and I don’t think I would ever do this). I would then move into talking about how these activities have a continuum. I changed the picture a little to better represent the continuum concept.
We then talked about the human sexual response cycle. As we were talking we used the sexual activities to help make the sexual response cycle more concrete.
We ended with revisiting the pretest questions and talking about our own values. Most of our group really values the emotional components of relationships.
In the newsletter there is a great video for human sexual response that you might want to check out 🙂
If you’re teaching human sexuality and would like to use these materials, go for it.
Materials this Week
For our sexual health week we talked focused on STDs and contraception methods although we did include more general health information in the newsletter. We did a condom demonstration and then practiced putting on condoms (we used bananas as our phallics). It was really important that we did that because several parts of putting on condom were tricky such as opening the wrapper and making sure it wasn’t inside out.
We talked about the “morning after pill” and STD testing. This is a more complicated topic for individuals with medical guardians. Individuals have the right to these forms of medical care without guardian approval if they are part of post sexual assault forensics. But what about outside of that context? This was especially timely as we had this class the same week a New York judge struck down age limits on the “morning after pill”.
We played a game with contraception methods and STDs that mimic Go Fish. It was a lot of fun. The cards for the game are below. Depending on your audience, you could either print out two copies of the same cards or there are two versions of each card so you can squeeze in twice as many facts.
If you’re teaching a class on this topic and would like to check out our materials, I’ve included them below.
A new study by Amanda Saxe and Tara Flanagan looked at the attitudes of support workers in terms sexuality and disability. This study examined 25 university students who had experience as support workers in Canada (either as ABA therapists, Aids, teachers, or consultants). They found that students with no religious affiliation and who were more advanced students had more liberal views. When they said “more liberal” they meant more accepting of sex ed, masturbation, sexual feelings, relationships, intercourse, parenthood, and marriage and less accepting of serialization. Support workers were not biased against homosexuality per se, but they did indicate that anal sex is the least acceptable form of sexual expression for adults with developmental disabilities. In this study, training as a sexuality educator was not related to attitudes about sexuality and disability.
This article is not available for free on the web, but you may be able to view a summary.