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.“
This tool kit from ATN/AIR-P provides information on body changes; self-care and hygiene; public vs. private rules; staying safe: strangers, secrets and touch; elopement; safety planning for increased aggression; and Internet safety.
Some of my favorite features:
- Link to underwear designed to keep menstrual pads in place (I had no idea this existed!)
- They have parent stories throughout.
- They have suggestions for how occupational therapy can provide support.
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.
The Center for Sexual Pleasure and Health (CSPH) has a lot of great videos. Is one of my favorite cites. In addition to having direct information they also have videos for parents (“Use Your Words” videos).
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.
Parents are often afraid of the day that their daughter comes home and says she has a boyfriend! This social story having a boyfriend addresses this event to help a young girl understand what your expectations might be when it comes to having a boyfriend. We went with the strategy of instructing on how she can interact with her “boyfriend” in many age appropriate ways, for example, she can look at him, giggle, and then look away.
I have to say, the puberty session went great! It was just at the right level. Here are the activities we did…
Defining Puberty: This was the language we used to define puberty: puberty is your body changing from a child’s body to an adult’s body. It causes changes to your body inside and outside. Everyone goes through puberty but it might happen at different times and people’s bodies change to look different. Puberty is a time when you start to get sexual feelings. You don’t have control over going through puberty, but you do have control over how you react to it. It’s normal to have mixed feelings, some good feelings and some negative feelings. This definition highlights several key features of puberty (it’s in some ways different and some ways the same for everyone, it’s a natural biological process, it can be an adjustment).
They Tell Me I’m Going Through Puberty: This is a story told from the point of view of a teenager about the changes that are happening during puberty. This exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. The narrative format may help students relate to the changes that are occurring.
Boys/Girls/Both: In this activity, participants were given a series of cards each with a change that happens during puberty. They decide if these changes happen to boys, girls, or both. Again, this exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. Many of these changes are repeated from the first exercise although more are introduced. Each card separates out each change as concrete steps.
Puberty Worksheet: This worksheet is a check in on the changes participants have experienced, how they feel about these changes, and changes they anticipate. The worksheet was designed to help students anticipate some of the changes that will happen during puberty and help them to be aware of the changes that are happening in their own body. We use both open ended and multiple choice questions to stimulate different levels of thinking.
Diversity:We showed power point slides with pictures of several people showing a diversity of bodies and ages. Students were asked, “Which ones are going through puberty?”. This activity reinforces the concept that puberty is in some ways different and some ways the same for everyone. One thing that became evident was that the students had difficulty understanding that children hadn’t gone through puberty but the were quick to grasp onto the idea that adults are finished going through puberty. We used a few favorite characters to help the kids get a little excited about the topic.
Click on the Links Below to AccessMaterials
I’ve been working on a training for parents who are primarily Spanish speakers so I’ve been looking for materials available in Spanish. I hit the jackpot when I translated my search terms into Spanish. I thought you might be interested in my Spanish Resource List.
Free Resources in Spanish Specific to Youth with Disabilities
Books in Spanish and English Specific to Youth with Disabilities
Free Parent Resources in Spanish and English not Specific to Youth with Disabilities
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.
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!
In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).
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.
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
I’m really excited about this free curriculum, “Sexuality Across the Lifespan” by: DiAnn L. Baxley and Anna L. Zendell. It has versions for educators, teachers, and Spanish speakers. You can view the curriculum by clicking on the links below.
What makes this special? They do a nice job at adjusting lessons for different age groups, giving ideas for supplemental activities, and giving ideas for incorporating the topics into routines. The parent version really focuses on how to reinforce healthy sexual development through interactions and daily routines.
This curriculum in not comprehensive but does have sections on social skills, dating, sexual abuse, puberty, and anatomy. I hope you find this useful!
“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?”
In a parent focus group* on the topic of sexuality and their children with ASD several interesting themes emerged: parents struggle with what healthy sexuality looks like in their child with ASD, they feel their child’s social impairments make many sexuality topics difficult to understand, they feel the community does not understand the sexuality needs of their child, and they feel unprepared to support their child with their sexuality need.
Does that sound like you?
These researchers made several suggestions for parents. Although they were focused on children with ASD, I think this would be applicable for almost all children. I think they are also good things for professionals to keep in mind too!
1) Lean about sexuality and ASD as well as sexual development in general.
2) Think about your hopes and fears for your child. Also think about your own experiences learning about sexuality.
3) Set goals for your child (and I would maybe modify, to the degree that they are able, with your child).
4) Think about the method to communicate these messages to your child.
5) Coordinate with schools, physicians, ect.
I have found a book that may be useful called “Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders “. You can get a pretty good preview on google books to make sure it is right for you. I like it because it talks about ASD in general and then weaves in topics related to puberty. It also thinks about changes from multiple domains. For example, one suggestion was realizing your teen might need more control and finding ways to incorporate that into his or her daily life.
This tip sheet from the Better Health Channel may also be helpful: Sex education for children with intellectual disabilities – tips for parents – Better Health Channel
*Only a short preview of this article is available for free online. Although the entire article is available for purchase it is written for an academic audience.