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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
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.